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…

imgres

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

 

Ready, Set…..

It appears my SSDI has been approved! Yay! I am so relieved! The letter showed up yesterday, along with a very official findings report (all findings favorable – love that word – favorable).

Thanks to all my friends and family for the mental, emotional and financial support during this long process. I am grateful and humbled every day by the wonderful people in my life.

Oh, and one of the official findings? Even in government speak, it seems I’m long in the tooth. Sigh.

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.

Round 3

So I got my letter from SSDI in October turning me down again for disability insurance. Next step: find an attorney and schedule a hearing.

The first guy was recommended by a web site dedicated to lawyers that specialize in disability cases. Whoo boy. Armed with a recommendation in hand, Anna and I went to see a guy in Glendale named Mr. W. I googled him prior the appointment, and found out he had been practicing law since BEFORE I was born. I am no spring chicken, so I figured he’d either be super experienced or practically senile.  He was practically senile.

The office looked like an episode of Lawyer Hoarders. One whole office was so crammed with ancient case files and old copy machines that you could barely see in the door. The guy had a handler for pete’s sake! “Mr.W. will see you now”. Ok….he then proceeded to ask me three times when I had quit working; five times what it was I had done for work; and then deny a call from “one of these new fangled cell phones”. Wow.

Needless to say, we moved along pretty quickly from that appointment. The next one was with a guy named Mr. P. He was great. He knew the law inside and out, has been lecturing on it for 30 years and had a great sense of humor (very important to me, obviously). He was positively gleeful with the side effects of my various medications and treatments, and told me he was confident that based on my being a bit “long in the tooth” (no kidding, he said that to me!) and my history of MS treatments and symptoms, a settlement for benefits was likely. Phew.

So now I wait for a hearing date, and assuming all hell doesn’t break loose and the creeks don’t rise, this will all be behind me by the end of 2012.

Leapin’ Lizards

I’m working on getting my house in order so I can put it in the rental pool here while I wait for it to sell. This entails decorating it in a Southwestern style and, being this close to Mexico, I figured I’d get some inexpensive, yet colorful, tin stars, suns, mirrors, etc. to brighten it up.

There are more than a few outdoor pottery and garden art shops here in Tubac. They work on the honor system: you find what you like, look at the price, figure out the tax, and then throw either money or a check in a slot by the door.  One such place called La Paloma has a clearance section outside, and I thought this might be just the ticket for my budget decorating needs.

In amongst a bunch of cracked plates, dented tin pots, hanging kokopelli silhouettes and fairly tacky wall hangings, I saw some mirrors that looked quite promising. I reached across the table, and pulled one out. AAGGHHH! Something jumped out of it! I threw it back down and held my breath. Nothing. Now, as a nearly native Arizonian (2 summers makes it so), I wasn’t about to get all squeamish and girly. I leaned gingerly in to see what it was and if it was gone. AGGGGHHH! The damn think jumped back out of the basket it was hiding in.

I leapt back and took two steps backward ~ but in my new backwards state I couldn’t catch my balance and down I went…. in the process knocking over a basket full of tin lizards (ironic).

So there I was again. Splayed on the ground, covered in tin lizards (better than cat shit!), with 2 men standing over me asking “Senora! Are you ok!?”

Of course my ego was bruised, but other than that I was fine. I didn’t buy a mirror, or a Kokopelli or even a tin lizard, for that matter. I think I might head to Home Goods after all.

Backwards in High Heels

Ginger Rogers, the New York Dolls, The Impossible Art of Being Female… all spring to mind when conjuring up the image of walking backwards in high heels.

So what can this possibly have to do with me? I haven’t slipped on a pair of shoes with anything higher than a zero % rise in years (and boy how I miss wearing those fabulous stiletto pumps I used to parade around in without a thought).

Today was much like any other day. I got up, made some coffee, powered up the computer, went to the post office and dropped into the gym for a light workout. Then things went a little awry. My workout was anything but difficult, and only vaguely satisfying at best. Once I got back into the house however, I started losing my balance and instinctively taking steps backwards to regain a point of center. Now this whole afternoon I’ve been sashaying backwards and it is the oddest feeling ever.

I’m not sure what little spring has sprung in my brain, but if this keeps up I’ll be auditioning for a dance partner very soon!

Bonus!

My last post was from Gothic Rosie’s blog about the crummy things MS does to us and how it makes us feel. Well that’s all boo hoo and fine, but now let’s focus on a few of the bonuses of having MS.

1. Handicap parking. No need to say more. You know you all covet it.

2. Built-in excuse. The truth is, often times I just don’t feel like getting out of bed or getting dressed or going outside. The other truth is, that sometimes when I don’t want to do something or go somewhere I play the MS card and who’s going to call me on it? The real truth is, no one will ever know but me ; ^ )

3. Have a seat! Now that I am getting more accepting and comfortable using a walker, I find that I always have a place to sit down. No more aimless milling around for me – I am now purposely seated, wherever I am.

4. Jogging.  I’ve never been able to find the allure in jogging. Holy cow, I spent most of my life running to the store, running after the kids, running to catch a plane, running to a meeting….Why would I want to do that for fun? Jogging is now officially off my plate. Hallelujah!

5. Cocktails. Similar to the built-in excuse above, who is ever to know if I’ve had a quick nip or two and am a little tipsy ~ or if I’m just having an unsteady-on-my-feet day? My walker comes with a pouch under the seat…none of your damn business what’s in it.

6. Popsicles. Heat is the enemy, hence unlimited popsicles are your friend.

There are more, and I will add to this list as I think of them. Right now, poor me, I’m off for a popsicle.

 

 

How Us With MS Feel

I found this on my fellow MS blogger Gothic Rosie’s site. I reproduce it with her permission. Some of it is pretty darn funny….

__________________________________________________________________________________

This is a Subjective creative writing page. As such it might be controversial in some ways, you are warned. The Author is Unknown

How us with MS Feel

How us with MS Feel……

When We Say We Can’t do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below…
– Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?

– Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

– Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

– Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.

– TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

– Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

– Tingling: Stick your finger in an electrical socket – preferably wet.

– Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?

– Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.

– Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

– Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

– Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

– Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzzzzzzzzzzzz

– Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

– Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

– Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensitive area.

– Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

– Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.

– Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

– Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

– Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

– Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

– Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

– Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

– Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

– Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.

– Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

– Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

– Swallowing: Try swallowing the hottest chili pepper you can find.

– Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms – welcome to our world.

Then Finally…

After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.