How refreshing. Yesterday I went to see the doctor assigned to me for the 2nd round of my SS disability claim. Unlike Dr. Flintstone, she actually gave me a quasi neurological exam! She asked what meds I take, what characteristics my symptoms took on and not once, did she ask me if my children were married or why I lived in Tubac. Hooray! I feel like I might actually have a chance this time. At the very least, I feel the information she submits to the powers that be up on the big SS disability judgement thrones might actually reflect what is going on. Fingers crossed!
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.
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!
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.
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!
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!
3M: Menopause, MS and Metallica
I had a friend stop by last night for dinner and for some reason I was chattering away like I’d been stranded on a desert island for a month. We were listening to music and I started reminiscing about my years in the audio industry and some of the more memorable experiences I’d had and thought I might as well write this one down lest I forget my trip to Kansas city back in 2004 (I think).
My friend and co-worker CP called me one day and asked me if I wanted to go to Kansas City to see Metallica with her and her then boyfriend (now husband). As you’ve no doubt gathered from past posts, my general response to any question like that is a resounding, Sure! The new bass player was a friend of CP’s boyfriend, and he thought it’d be fun if they came out to hang with the band, and bless CP’s heart, she thought to invite me along.
Now, my girls were about 17 and 19 at this time. Elizabeth was living at home, so when some of her classmates heard about this news they were duly impressed. “Dude! No way! That’s sick! You rock!” I was somewhat chagrined then to admit to them that I’d never even heard a Metallica song to my knowledge, and could someone lend me a CD?
It took me about 10 seconds into one song to affirm my hunch as to why I wasn’t a Metallica fan previously. This was no cause to cancel the trip however, I mean come on, this was one of the most famous heavy metal bands of all time. I was ready to p-a-r-t-y! Or at the very least, be in for a rock and roll adventure.
The first thing we do is check into our hotel which is the local Marriott downtown. The band is staying at the ritzier Fairmont Hotel a few blocks away. CP starts looking in the local paper for what one can do in KC on a Monday night, and says ~ oh boy! David Bowie is in town, and playing the night before the Metallica show! Who knew! Armed with this seemingly trivial fact, we head over to the Fairmont to meet up with RT, the bass player.
We find a table in the lounge and order some drinks. We’re laughing and chatting and then CP says to me in a stage whisper through clenched teeth, “move the newspapers”. Huh? I look at her quizzically and then at the chair next to me that is piled with our newspapers (featuring the David Bowie info) as she repeats again, in the same stage whisper, “move the newspapers.” I do as I’m told and a rather lithe, nice man with curly hair proceeds to sit in the vacated chair. I say hello and introduce myself. He looks a little surprised and introduces himself back as Kurt. “Hi Kurt” I say and then turn to see CP’s face.
She rather urgently pulls me aside and tells me that it’s KIRK as in Kirk Hammett one of THE most famous guitarist on the entire planet. And I’ve just called him Kurt. I feel awful ~ what a rube! I mumble an apology and take my seat, internally resolving to pay more attention and make no more faux pas’ that will further embarrass my friends.
The conversation turns to David Bowie again ~ one of the guys had seen him in the gym that morning. The gym!? Are you kidding me? These guys are supposed to be legendary rock stars ~ WHOO HOO!! Wait, the gym?
Well I had had a certain special friendship with the guitarist for Bowie’s band at that time that had ended rather abruptly about 2 years before (that’s a whole other story…) but CP and I decided that it was rather serendipitous that we were in Kansas City at the same time (what were the odds?), that I should let bygones be bygones etc., so I tracked down his number and gave him a call.
He was pleasantly surprised to hear from me and also thought it rather serendipitous that we were both in Kansas City at the same time (what were the odds?) and asked if we’d like to come by and see the Bowie show that next night. Yes! We would indeed! He promised us a couple of tickets (for CP and me ~ we reasoned that if Metallica couldn’t figure out how to get in on their own, then shame on their rock star asses!).
So with this new wrinkle ironed out, we head out to dinner. Yee haw! Now it’s going to be time to really see how the big boys play. I’m trying to decide how to politely decline the shots of tequila and lines of cocaine and stick to my wine, when the waiter comes to the table. One beer. Two wines. One carrot juice. Two sparkling waters. One Pepsi. That’s it. And the wine and the beer were me, CP and her boyfriend. WTF?
We proceed to have a very easy going conversation around the table about yoga, stock tips, stretching techniques, failing eyesight, organic gardening and so on. Just a bunch of semi middle aged professionals having dinner. Sheese. Some story to take to the folks back home.
The next day CP and I head over to the corporate offices of the big publishing firm we work for, located in KC. We breeze in and tell everyone how beat we are from being up all night partying DOWN with Metallica and and our plans to head to see Bowie that night (“those kooky Californians”….we had a reputation to uphold). La de da, indeed.
When it’s time to head over to the show which is way, way, way outside of town, we collectively take a cab ~ me, CP, her man, the bass player, the super famous guitar player, and the band’s head of security. We all get to the venue and us girls were on the list (“step right this way”) with like, Row 5 seats, and the Metallica guys were true to their rock star roots and got in no problem.
We stood around together (for some reason CP and I didn’t actually sit down in our seats) until the show was over. Then my new friend KIRK tells me that he’s never met any of the guys in Bowie’s band and would I please introduce him to my friend the lead guitar player? I agree and we wait outside for the musicians to shower and get organized and come outside.
So here I am in Kansas City in a parking lot “backstage” area, meeting up with an old flame I haven’t seen in 2 years and doing introductions between these two rock gods like I’m Artie Puffkin from Spinal Tap. I found some pretty ironic humor in that. My old friend asks if I’d like to join him and the rest of the Bowie band for dinner, and I say breezily “oh thanks, I’d love to, but I’m with the Metallica guys tonight”. Since when is my dance card being balanced between David Bowie and Metallica!!?!?!
So off they all go, and we head out into the parking lot to find a cab. Uh oh. Everyone from the show has left an hour ago, we’re out pretty much in the middle of nowhere and there isn’t a cab in sight. As we’re standing around formulating a plan, this big, white, very slick tour bus glides up to us and stops. The door magically and silently opens and a man steps out and says, “would you like to ride with Mr. Bowie back to the hotel?”.
Um, would we like to ride with Mr. Bowie back to the hotel? Hell yes, we’d like that! We board the bus and Mr. B welcomes CP and me and calls us “Love” (swoon), and then all the musician boys sit together and talk shop for the 20 minutes back to the hotel. When we arrive back DB again says something that involves calling us “Love” (swoon) and we all head inside. CP and I excuse ourselves to use the ladies room and tell the rest of the gang we’ll meet them upstairs.
You can picture us together: “David Bowie called us Love! We rode on his tour bus! He called us Love!”. We were definitely having a major Tiger Beat moment, but I mean really, how often do you get ride around KC with David Bowie? Even a pair of old jaded music industry gals like us were pretty impressed.
We breath deeply and slowly and then saunter casually upstairs to the lounge. After all, we can’t seem like a pair of jacked up groupies when we’re hanging with the coolest heavy metal band on the planet. So imagine our surprise when we sit down at the table and all these super famous, ultra cool guys are all saying, “We met David Bowie! We got a ride in his tour bus! We met David Bowie!”
Just goes to show that everyone has someone they look up to and admire, but I’m betting he didn’t call them”Love” (swoon).
Back in the fall of 2009, Lisa called me and asked me if I wanted to go to Nicaragua with her for a week. Yes! I wanted to go! I think she was a little surprised by how quickly I acquiesced, but believe it or not, Nicaragua had been on my bucket list of places to go. My ex Ken and I went to Peru back in the 80’s because all our friends were going to Italy – so unexceptional. No one went to South America (except us). Now the hot spot is Costa Rica…and no one goes to Nicaragua. That’s how it made my list.
I told my sister that based on the fact I was buying a condo in Arizona and the NAMM show was coming up, all things timing wise should fall nicely for us to leave at the end of January. This gave me plenty of time to pack, get the house fixed up and be ready for the tenant to move in on February 1. I would need a nice holiday post NAMM and I could return rested and meet my belongings in Arizona (which Elizabeth was spearheading) and start my new life.
The first little niggle came when I had to have the notary for my mortgage papers meet me in Anaheim at the NAMM show. I suggested we meet in my room at the Marriott. The poor dear. She drove from LA to Anaheim on a Friday night which took her over an hour in traffic. She had to park 4 blocks away and wade through some….let’s just say “festive”…. show attendees; a marching band outside; a drum circle in the lobby and a mariachi/trance band in the bar. You could still hear hints of this cacophony up in my room on the 9th floor.
She held it together as best she could as I signed ream after ream of paperwork. After about one hour, she took a deep breath and headed back out into the wilds of Anaheim on the first night of NAMM. I’m sure she was happy to see the last of me. Little did she know.
Sunday night, post trade show I headed home and swapped suitcases. I had one packed with business clothes, and one packed with vacation clothes. Everything else was mostly packed up and ready for the movers on the following Tuesday (which as I mentioned, Liza was managing for me). The next morning, I get a call from my mortgage broker in Arizona telling me that all the papers had to be resigned and re-notarized. It turns out there was some discrepancy in the paperwork due to state laws of some sort. Whatever, I didn’t really care. My notary friend drove back over to my house and I signed reams and reams of paperwork, again. Another day through the system, and voila! the keys would be mine.
I hopped on a plane the next day at LAX and met up with my sister who was flying from Seattle, at the Houston airport. Yay! We’re on vacation! It’s coming together! Just as I am stepping on to the plane (literally) my phone rings and it’s my mortgage broker. I need to sign more paperwork. There are some signatures missing. No big deal. I am way ahead of him and have left a signed power of attorney giving Elizabeth signing authority.
No. If she signs on those four dotted lines, the WHOLE shebang needs to be resigned and notarized. Oh for heaven’s sake. I tell him that everything I own is being picked up by a moving truck the next day and is being shipped to Tubac (where I won’t be BTW, because I’m…on…my…way…to… NICARAGUA YOU FOOL!).
What can I do? I order a drink, fly with Lisa to Managua, and decide to deal with it the next day. We get to our final destination via what I remember as donkey, motorcycle, and wagon. This is in fact just how everyone around us is getting to their destination, we’re actually in a nice car compliments of Lisa’s friends.
We settle into an amazing house which we share with Max and Judith Bailey, replete with an indoor swimming pool. The Baileys are a wonderful couple from Seattle, parents of my sister’s friend that is our hostess in Nicaragua. The next morning we head over to Tamara and Jonathan’s house where he miraculously has email, Skype, a scanner and high speed internet. I find out that none of the remaining 4 signatures need to be notarized, so I sign, send and pray. Either I will end up in Arizona in a home, or a dumpster. Fortunatley, we all know how that ended up.
After this crisis is averted, the BIG news is revealed. The Nicaraguan baseball World Series is taking place in Granada where we are staying: the Orientales de Granda vs. the Leones of Leon. We can get box seats for about $15 US per person – are we in? Are we in? Are you nuts!? Lisa and I and the rest of the gang can’t get to the stadium fast enough.
There is food (I use the term lightly) being served that is like nothing I’ve ever seen before that is gray, gelatinous and being served in a banana leaf. This picture doesn’t do it justice, this dish actually looked vaguely edible with identifiable fruit and chicken or something.
The stands are PACKED beyond belief with both sides chanting, pounding, screaming, threatening, pushing, taunting, drinking, shoving, singing, hollering ~ we are talking some serious team spirit here. Lisa and I kept wishing our brother Dave had been with us. He would have loved it!
So, of course, during the midst of all this mayhem and chaos, I have to pee. Lisa generously offers to come with me (have I made it clear before how much I adore my sister?) and together we somehow manage to conscript a policeman to escort us as we slog through the myriad of drunk and rabid fans to the….bathroom? No. Toilet? Maybe. Pit? We’re getting closer.
There is a line (ah, one thing seems universal in all cultures ~ the line to the “ladies room”). I stand there for about 15 minutes until I get to the front and am told via gestures, giggles, pointing and pantomime, that unless I cough up some córdobas for a scrap of toilet paper, I am out of luck. I of course, have left my purse brimming with cordobas up at the seat which is far, far, far away. The police escort is long gone.
I am directed to another line where the general consensus I take away is that they are a little more generous and I can just go pee after the appointed waiting period. Not so. By the time another 20 minutes has passed and I get to the front of that line, I get the same story – no cordoba, no paper, no pee. Oh My God. As if.
By now I’m doing the pee dance and ain’t no way I’m not getting past the paper squad and into the bathroom (I’m still naive enough at this point to think there are stalls – hah!). I start enunciating in my loudest, proudest American that I am from Los Angeles, California ~ an exotic and rare bird here in the wilds of the Granada national baseball stadium. It works. A piece of paper is actually gifted to me and finally! it’s my turn.
There is a stall of sorts. 3 raw concrete walls and a square concrete pit. Let’s not forget that I must catheter in order to pee at all. Holy cripes. This is a challenge even for an old pro like me. I gingerly lean my hand on the wall, do my business, and get the hell out of there. I take advantage of a plastic oil barrel filled with cold water to wash in.
Agghh!! I feet like I’d passed some sort of test ~ a nightmare pee test. The oddest thing of it though, is that all the women in there were funny, friendly, joking, curious, kind and helpful. Despite the crude conditions and lack of privacy there was the same old female bathroom camaraderie that you might find at an airport, a theater or Dodger stadium. Just a bunch of cordoba packing, beer drinking, gelatinous-banana-leaf-wrapped eating gals enjoying a game.
Although this isn’t something you’d find in too many tour books, going to the World Series in Nicaragua with my sister is one of my fondest memories in life to date. And best of all, the home team won ~ go Granada!
One of my absolute favorite things about moving to Tubac has been the invitation to join one of the several book clubs that exist here. The Tubac Bookies as we’re called, consists of 12 women: Karen (our leader), Sue, Germaine, Nancie, Pam, Nan, Bernadette, Veronica, Tina, Sharon, Dianne and me.
This eclectic band of women come from all over the place and are all smart, creative, witty and sassy. We meet on the first Wednesday of every month and take turns hosting. While we’re getting together, the significant others of the ladies also meet at someone’s house where they eat hot dogs, drink scotch and I imagine, grunt together. They affectionately call themselves The Illiterates.
All these women have beautiful homes. Whoever is hosting trots out an amazing spread of food and wine on a beautifully laid table. We’ve had fresh seafood, homemade soup, French roasted lamb, authentic Brazilian dishes, deserts…I could go on and on, but I’m getting hungry. The food and the presentation is always as individual and amazing as the women who serve it.
Yesterday morning dawned like any other, until I tried to get out of bed. That turned out to be a slow go. My limbs felt like they had somehow become enmeshed in the fabric of the sheets during the night and did not wish to be parted. I wish they’d felt like that between 3 and 5 a.m. when I was tossing around like a landed fish.
My bed and my legs finally extricated, I went out to become one with the fabric of my kitchen, mainly the coffee pot. Coffee, injection, vitamins, oatmeal and fruit usually leave me feeling pretty chipper and ready to go. Not so much yesterday. I looked outside and there they were ~ clouds.
A few clouds…big whoop you say! I agree ~ generally no big deal. But something in that combination of barometric pressure, heat, wind and cloudiness took the feeling of having any blood in my body away. This was going to be a couch day, no doubt about it.
I figured though that by 5:30 it would cool down enough to ease my feelings of malaise so that I would be able to go partake in some lively conversation, amazing food and stellar company, but alas, no. I was still a drained noodle with tingling skin. (Good visual, yeah?)
Now you all know how much I love food, wine and company. It was with a heavy heart that I had to cancel at the last minute. My wonderful friends reached out with concern, good wishes, offers of help of any kind ~ a kinder group of friends would be hard to come by.
Next month is my turn to host. I’m excited to have everyone over, but this will be the true test of friendship with my girls. My house is tiny in comparison to all theirs, and my energy can be limited by unforeseen events like clouds in the sky. I know this bunch though, and I can guarantee that they will be just fine smashed into my living room and eating pizza hot pockets if that is all I can muster up.
P.S. Bookies if you’re reading this ~ I’ve never made or eaten a pizza hot pocket in my life, and don’t intend to start now, so it’ll be safe to come over….
I filed all the paperwork myself for the second round of SSD as I mentioned before. I’ve been feeling confident and a little smug because I finally got the info from Dr. S who has been my primary MS doctor for 11 years and truly knows the course of my condition. He sent about 30 pages of back up to go along with his initial letter supporting my claim, so I’m thinking YES! No problem from here.
I thought it might be a good plan to read this medical tome that he had sent along detailing the progression of my MS over the last 11 years. It was not. Denial has been a key component in my personal MS treatment, and this sent a bit of a shock wave through the old denial pond.
It seems I have turned a corner. For the past 10 years I have been chronicled and duly noted as fine, stable, optimistic, slightly overweight (not by Dr S. but by a 2nd opinion man ~ bastard!), strong, and with all kinds of messy medical notated bits regarding the old spinal column and brain.
Somewhere mid 2010, the notes start to suggest some progression (finally some good news!) from primary-progressive MS to secondary-progressive (Oh. Shit. Not a good kind of progression at all). You are no doubt asking the same question I did: Well, what’s the difference?
According to my #1 go to resource the National MS Society (www.nmss.org):
The name for this disease course comes from the fact that it follows after the relapsing-remitting course. Of the 85% of people who are initially diagnosed with relapsing-remitting MS (RRMS), most will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without any relapses(also called attacks or exacerbations).
Well isn’t that special. Additionally, I found a hidden gem stating that based on the level of my demyelination, it’s amazing that I get along as well as I do. Another question as to what that means:
Multiple sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord. In MS, the body’s white blood cells attack tissue called myelin sheath. Myelin sheaths are the protective covering for nerve fibers in the brain. Much like an electric wire is insulated with rubber or plastic, the myelin sheaths cover nerve fibers as they transmit nerve impulses within the brain.
When a myelin sheath is worn down or destroyed, the process is called demyelination. Demyelination causes the nerve fiber to be exposed. The exposed nerve fiber is less able to transmit nerve impulses. As a result, messages between different parts of the body are not transmitted as effectively. After the myelin is destroyed, scar tissue called sclerosis is left behind in the damaged areas, which are referred to as lesions or plaques.
Lots of demyelination = lots of of scar tissue called sclerosis = multiple sclerosis!
Damn! I should have kept my Nosy-Parker-Gladys-Kravitz self out of those notes. In reality though, it doesn’t really make much difference to me. Some days are better than others. Some days I feel – Oh! so demyelinized! Some days I feel OK. The pictures show my nerves looking like stars, that I can see reflected off the surface of my day to day life. One sclerosis at a time.