Hey, Hey, You Sexy Thing

Some weeks back my Mom feel down and banged up her knee. She went to the doctor to treat her knee for oh, about 6 weeks, before finally discovering that she in fact had a broken hip! If anyone ever doubted the fortitude of Scottish women before, my mother is proof positive of their grit and stoicism. She hobbled around on that thing for a month and a half and only grumbled a little now and again before finding out she needed an entire new hip.

So, after spending one fabulous month with my sis in Seattle, I came home to LA for one day, turned right around and came up to Lakeport, CA to help tend to Mom while she was off her feet.

As it turned out, my first order of business was to throw my back out and render myself virtually useless to my sister, brother, sister-in-law and nephew who are holding down full time jobs as well as caring for now, two of us.  Being able to drive, I was able to help my sister get Mom to various appointments. Lisa however, broke her foot a few weeks back so basically we looked like this: Mom, broken hip and recovering from surgery; Lisa, broken foot and damaged shoulder socket (soon to be replaced); me, blown out back and MS. My chiropractor said we should have our own fife and drum corp as we looked like we’re returning from battle.

One of the bonuses to being in Lakeport is that my sister-in-law and brother are very well known in this small town as they are both deeply involved in the education system here, and have been for years. You drop the  name Hagberg (my maiden name) and it’s like being a Kardashian here in LA. Just about everyone has had my brother as an English teacher at one time or another in the last 18 years, so nurses, pharmacists, waiters, grocers, yoga teachers, mechanics….you name it, they roll out the red carpet once you drop the H name. Lisa and I threw it around like we were angling to get backstage to a hot concert. And it worked. It’s a nice little town and we were royalty.

We also spent quite a bit of time at the hospital where I would go visit my mom or take her for follow up appointments once she was sent home. For these stints I would use my walker if I was flying solo without my sister, and let me tell you, I was feeling like pretty hot stuff. In Los Angeles, people generally look at me with a twinge of pity when they see me with a walker. Not so Lakeport. Perhaps it was the aura of the Hagberg persona that was wafting around me, or maybe I just need to spend more time around hospitals and convalescent homes. I have NEVER been hit on before when using a walking aid, but on an almost daily basis I got a wink, a nod, or a “hellloooo there!” It was a great ego boost.

Thankfully Mom is back living at her home after a record 30 day recovery period, all the siblings and families have returned to a fairly normal routine, and I’m back to being a regular, middle-aged, hirpling, non-celebrity in Los Angeles.

 

 

Lucy in the Sky

I was born in 1957, which put me pretty much smack dab into the middle of high school when it was cool to be a hippie. I didn’t let the grass grow under the platitude of “peace, love, sell some incense”. I ate it up. Long hair parted down the middle, abalone shell necklace on a leather thong, natural wool dyed hats, Joni Mitchell, hairy legs…bring it on.

I had just missed the drug induced 60s (“if you remember the 60s, you weren’t there”), but there was still plenty of pot and things around in my world. A “lid” of pot was about $10 and smelled mainly and suspiciously of lawn clippings. Never was my deal and still isn’t. (MS bonus = medical marijuana, but despite the slight, yet coveted, “bad girl” image it invokes, I just can’t go there.)

So along comes MS. Early symptoms around 26, final diagnosis at 43. My hippie persona was well behind me (six figure salary, BMW, Prada perfume, $100 haircuts, W Hotel).  I had luckily survived the music industry during the crazy 80s and 90s and my drug of choice was now a solid  $30 bottle of Pinot Noir.

Welcome Copaxone. Ew. Are you fucking kidding me? A DAILY injection? As I’ve chronicled here before, it’s an uncomfortable, lumpy, burny, creepy, bummer. And it’s like, wow, a MONDO drug. Not only that, but to be 100% honest here, I still really don’t have a clue what the heck it does or how it works after 12 years (that’s well over 4,000 shots). It also now costs over $4,000 per month (thank you health insurance and co-pay assistance!). Huh. I haven’t done the math before….holy cow!!! I had gone from sanctimoniously turning away from lawn clippings, to daily injections of drugs I imagine are more expensive than the finest grade of heroin.

But back to my hippie roots. I’ve discovered that since I’ve had to quit my high powered, super fun, big dollar, high pressure job and been forced to slow down and nap, hirple and read all day that I’m starting to pull out the Joni MItchell, quit dying my hair, and only occasionally dabbing on some left over Prada. I’m now reduced to $10  boxed wine – mainly because of financial issues, but also because it is much more eco friendly……

The proverbial drug cat got out of the bag though. My doctor has given me valium to take when the spasticity is bad or I’m feeling a little too anxious. I take a statin for high cholesterol as I can’t exercise enough to get it down naturally. I take a nightly dose of antibiotic to counteract UTIs caused by catheterizing. You get the idea.

I’ll continue to recycle. I’ll continue to conserve energy. I’ll continue to eat organic. But, I think a little chemical help is warranted and welcome thanks to this interloper – MS.

Illustration by Hizza Siller

 

Harrumph

I just got off the phone with an old and dear friend who’s in LA for the Grammys (congrats again, B!) and I realized in speaking with him that I am in very strange place right now. It became clear to me that this SSI thing is really hanging over my head, more than I have given credence to. (Is that even grammatically a sentence? For that matter, is that last sentence even grammatically correct? See? Proof I’m losing my grip).

Several things are very different. There’s a cumulative effect over the past 18 months of 1) not working, 2) not earning boatloads of money, 3)  being this physically hindered (hirpling, fatigue, etc). 4) laying this low. Number 4 is based on numbers 1-3 and not feeling very sociable (What, me? You laugh, but it’s true).

And then of course, there’s a fifth thing, which is effectively being called a liar by the Federal government. That can sure take the wind out of your sails. Makes me wish I’d cheated on my taxes ~ at least just once. The net result is I’m feeling kind of low. Not depressed so much as just kind of bewildered.

This looming melancholia might only be the result of poor sleep and a rain storm. Or I might just give it to myself this time and accept that I’m justified in feeling a bit blue. Chances are good tomorrow I’ll be sunshiny, again with a hint of a lilt in my hirple.

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!

Roller coaster…

I haven’t posted in some time due to house guests, another trip to CA, taxes, etc. but I think the main reason is I’ve been processing ~ deeply processing.

You see, after I got turned down for disability I did a bunch of research on things. The unhappy statistics I uncovered included that first time applicants were turned down something like 60% of the time, and 2nd time reconsideration applications were turned down 85% of the time. Shit. Not good odds.

I also was counseled to look up attorneys on this certain website and see how they stacked up with peers and clients. So I Googled and researched and emailed and Googled until my poor numb fingers were like cold dead fish. The net result is I’m filing my appeal myself with the help of some great books (thanks Robin and Rudy!); some A-one letter writing coaching from a friend who has worked extensively in disability law (you know who you are); and lots of good advice from the National MS Society website.

I found an attorney here in Tucson who comes very highly rated by the lawyer/peer rating and also also by friends here who have used him. I figure if I have to take this one step further to a judge, I want someone local rather than some slicker from NJ.

That decision having been made, I hirpled down to the SS office in Nogales to get some application paperwork (the filing online website being inoperable for some reason). I met with a very nice lady who set me up with what I needed. In the course of the conversation, I asked her a question: If the state sees me as disabled (so no unemployment benefits) yet the Federal government does NOT see me as disabled (so no SS benefits) then what the fuck does she suggest I do for some income!? (Ok, that was my inside voice. I actually asked her very politely).

She suggested I head around the corner to the Arizona Department of Economic Security. This is where the pondering and the processing started.

I went in and grabbed an application. Apparently, with zero income, I am conceivably eligible for food stamps and state subsidized health care.

Hmmm…..let’s look at this for a minute.  I own 2 homes. I own a car (a BMW no less). I have money in the bank. I have a stock portfolio. I have no debt beyond my mortgages.I have MS. I have no income. I have limited physical energy resources. I hirple. I’ve paid into the system and played by all the rules for almost 40 years. I don’t think I should be forced into living in squalor before I get the help I believe I’m due.

Anyway. I take note of my surroundings and one very stark and striking fact becomes clear:  I am the only non-Hispanic person in the room. When I take my application up to the clerk she says to me, “is this for YOU?!” I assure her that it is, take my seat and jump on a roller coaster of emotions that, in no particular order, go like this:

Anger, humiliation, fear, righteousness, embarrassment, fury, shame, frustration, sadness, pity and mortification. That’s off the top of my head. At one point I wanted to scream. At one point I wanted to be deified. At one point I started to cry.

I’m not a big fan of “Why Me”, I mean, heck, “Why Not Me?”. This however was one major eye-opening experience. The gamut of emotions and thoughts that ran through my head included some that I am too ashamed of myself to admit here publicly. One big take away for me was this: every politician from your local rural mayor to Mr. Obama himself should all be required to enter into this system for even just an hour or so. It is extremely humbling, to say the very least.

God bless America, I think.

 

29 Days

My friends Karen and Billy came over for dinner last night (fish tacos) and she brought me 2 lovely gifts ~ one, a bowl of fresh cut up melon and two, a book which she put on my coffee table when she came in. As I was in the middle of getting the tacos together, I quickly only noted one thing that she pointed out about the book, which was that she had spilled water on it and so it was kind of “wonky” in appearance.

This was significant to us both, as my lovely friend is probably the only person I know who will lend me a brand new copy of a book before she’s even read it. Honestly, a brand new, unopened book is sacrosanct to just about every avid reader I know ~ except Karen. I try to turn the pages in little laps, not leave it open spine down, not take it to the pool and every other trick known for keeping a book pristine. Invariably and inevitably, the borrowed book ends up with a lipstick smudge, or a coffee dollop or a wine splash or some other tell tale sign that I was engrossed and consequently sloppy. Karen never seems to mind though ~ a trait I find both big hearted and enviable.

So her handing me a book that was so used was notable. It wasn’t until this morning that I actually realized that the book was one she and I had discussed called 29 Gifts. This is a book written by a woman named Cami Walker who is diagnosed with MS and changes her attitude and her life through the simple act of giving (and consequently receiving) 29 gifts in 29 days.

Not only did I love concept right off the bat, but the writing style of her book was like reading my own thoughts. She writes about pity parties. She writes about jumping out of planes without parachutes. She writes about not being willing to seem disabled to her friends. She writes about anger, humiliation, sorrow, frustration. I swear, if she knew the word hirple it would have been in this book.

Her “prescription” from a friend to give 29 gifts changed her in uplifting ways and inspired her to start www.29gifts.org. I have joined up and am starting my 29 day journey today, right now. Karen gave me the gift of this book and the idea of 29 gifts, and I am passing that gift on to you!

As I Hirple Along, Singing a Song: Updates on Cows, Disability, Unemployment and More….

I was just reading some past posts and figured anyone following this blog must be dying for some follow up info, so:

1. 10 cow headbands almost drove Anna mad. She made them, she grumbled, and now we’ve gotten  an order for monkey headbands. I kid you not. The good news is the horseheads sold, as did 8 others in addition to the custom order cow headbands, so now we are both getting ready to retire. Monkey headbands, really? This is the gravy order, no doubt.

2. The follow up to the solu-medrol is a new prescription for a muscle relaxant called Baclofen which apparently is specifically for MS patients who hirple. I just started it and will post as I progress…but I think it might be working already ~ I WALKED .60 MILES TODAY with only a walking stick! This is huge and I am happy!

3. Arizona sent me a letter confirming that I cannot get unemployment as I am disabled. Huh. Ok, so with no Fed decision yet, I am getting exactly ZERO help from any of the entities that I have paid into for 35 years. Something feels very wrong with this system.

4. Believe it or not, I found fresh Dungeness crab at the Tubac Market last night and as it is one of my favorite things in life, I bought one as a treat. Last night was the famous Lopez red sauce with a baguette and sauteed spinach, tonight is a carrot soup with Dungee crab…can’t wait for this! In the process I found this really cool food blog. Here is the recipe: http://butterpluscream.blogspot.com/2010/02/carrot-soup-with-dungeness-crab.html

Can You See Me, Now!?

I really lucked out in the family department. My immediate family is loving, supportive and most importantly, really funny. My brother Dave has a rapier wit, my sister Lisa has a flair for the absurd, and if you look up witty in the dictionary, you might see a picture of my mom Jeannie. Suffice it to say we are all corny, smart, sassy, clever, somewhat droll and more than a little irreverent.

Well, the apple didn’t fall far from the family tree, and my 4 nephews and 2 daughters are all pretty darn funny by their own merits. In particular, my baby Elizabeth is one of those people that can get you to snort liquid out of your nose with one single look. She is down right hilarious and her timing is excellent.

On my two Dr. visits earlier this week, I was enormously pleased to find that Liza had changed her work schedule so she could accompany me. We grabbed a coffee and headed over to USC for an ultrasound of my kidneys and bladder (a precursor to the actual Botox treatment which will be taking place in 3 weeks). We took an LA Times crossword puzzle book to pass the time and had a great time laughing over words we made up and just generally being silly as we usually are.

After a delicious lunch at an outside cafe in Pasadena, we headed over to see to my neurologist Dr. S. Now, I adore Dr. S. I keep going to him despite the fact that he is the absolute worst when it comes to waiting. This time, it took us over 2 hours past my scheduled appointment time before we got in to see him. We had our usual discussion about my hirple, how the solu-medrol worked and so on; I did my tip toe walk up and back and then we moved into the exam room. Liza of course came in with me, that’s the point of her coming along after all.

First thing she does when the door is closed is start nosing around. While I’m getting into a gown, she is picking things up and looking at them. She finds these glasses sitting on the counter and immediately puts them on. I’m cracking up, just a Dr. S. comes in. He begins to do the exam and fortunately for me I can’t see Elizabeth who is behind his back. Wearing the glasses. Taking pictures.

Once the exam is over Dr. S. retreats to his office and tells us to join him once I’m put back together. He has no idea that there is NO WAY I can put myself together after Liza shows me the pictures of her in the glasses. We manage to bumble back to his office where he prescribes me a new medication called Baclofen to aid in my walking.  I was biting the inside of my cheek trying hard not to laugh and missed the instructions on how to take the medication all together.

I gave Dr. S. the URL to this blog. Kind sir, if you are reading this, please forgive our irreverence. Liza remembered the instructions for the meds and we meant you no disrespect. You have to admit though, she looks pretty damn funny in these glasses.

Smarter Than a 5th Grader

As I’ve said before, I’m applying for SS disability. Everyone from my friends to my own Dr. have told me it won’t go through the first time, and that I’ll need to get a lawyer and appeal. Ah, America. Sigh. Believe me, if this thing could get cured, I’d be the first person in line to shred the application.

Anyway, about 2 weeks ago I went in for my mental exam. Similar to my sense of playing pretend during the physical exam, this consisted of playing with blocks, counting backwards and naming the current president.

The oddest thing was, when Dr. M opened her mouth and said hello, I started to cry. I am not a crier. I can see baby seals being clubbed on TV and be outraged. I can have my heart broken and drink whiskey. I can read about tsunami victims and send money. In my day to day life, I buck up. I am a bucker-upper.

So what the hell was this all about? I hadn’t even told her the name of the president yet, and here I was crying. Not a drop or two, but a full on Kleenex/not able to talk/hiccuping kind of a cry. The Dr. handed me the box of tissues and asked if this was normal behavior. I should say not!

When I was able to talk it all came pouring out. Being at a disability exam is down right humiliating. I don’t want to be disabled. I repeat. I don’t want to be disabled. Like renting the scooter, this was another landmark event bringing it all home. This time, in addition to being plain mad, I allowed myself to be sad for a change. I dipped my toe into the pity party pool for a few minutes and, truth be told, it felt good.

It didn’t last. I can’t feel too sorry for myself. When I think of all the poor baby seals and broken hearts and tsunami victims I recognize that I don’t have it so bad. I found out after spelling my name backwards and defining “foreboding” that I am still smarter than a 5th grader, and THAT is something to hang on to.

Today I am headed off for the physical side of the SSD exam. Doubtful if this time I’ll tear up, more than likely I’ll just hirple the hallway under the Dr.’s watchful eye and hopefully get a bad enough score on my gait to exempt me from future lawyers and appeals. Stay tuned.

New Year Resolutions

I love the whole idea of New Year resolutions. Having a clean line of delineation between “before” and “after” is always so, well, defining.

“An Oreo? Oh heavens no, I don’t eat cookies anymore”. “Watch TV on a Saturday afternoon? Oh no, I only work out now on Saturdays, no more afternoon TV for me”. “Go to the mall? No thanks, I’m off to go call my mother, I do that religiously every weekend”. Ad infinitum. Since this last Saturday morning, Jan 1, 2011.

We all have the best of intentions in giving up our little personal illicit activities (ok, chocolate might not be that illicit…) but like many things, as we all know, we skip one day, which turns into 2, which turns into a month….

I’ve often wondered why it’s so hard to give up Chunky Monkey ice cream…why can’t broccoli or brussels sprouts be so alluring? “Damn, what a day ~ let’s put it behind us with some cauliflower!”

But on a more serious note….I can’t tell you what I would give to be able to fulfill a New Year resolution to go running every day. To walk a mile every morning. To learn to salsa dance. To go to work everyday brimming with energy (of course fortified with fresh fruit and an egg white omelet…no donuts here, that’s on my resolution list!).

But I can wake up every morning and breathe clean air, look around me, feel the sunshine on my skin, hear the birds yammering and be grateful for all those things. I can still read, write, eat, laugh and hirple.

I would like to challenge each of you reading this to stop for a second and be grateful for what you can do. If you can dance, walk, run, ski, hike, skip ~ go do it. Today. Now. Skip to work. Hop on one foot to the busstop. Dance your way through the day.

One day, you won’t be able to do those things anymore. Guaranteed. Don’t be someone who looks back on life and thinks “Crap. I wish I’d gone dancing and eaten more green beans.”  Be one of those people who looked at the line and crossed it with a belly full of vegetables, and an ice cream cone in hand, doing the limbo and then sliding into home plate.