Monday, March 31, 2008

avoidance






I haven't written about my MS or MS in general for a long time.



It's avoidance.



It's annoyance.



It's just a series of pains, none of which are actually in my ass.



I had a call this weekend (love caller ID) from a woman whom I had met at a support group. She's unrelenting. A very nice and kind woman who has made me a mission of hers. She invites me to each and every MS group function and even has invited me to the occaisional afternoon movie and lunch.


When I answer the phone...I decline politely. I give some lame arse excuse to the date and time or just my fatigue level. Why can't I just say, " Your group is incredibly depressing! I don't want to fill my days with discussions of meds and symtoms. I want to fill my good days with things I enjoy doing, and THAT'S not one of them!" Honestly, I was the only one in the room not zipping around in a scooter. That's not something I want to see in my probable future.
I mentioned this to my doc once. His reply was that many others with MS don't go to the afternoon meetings because they are more functional and have jobs. I am functional...on most days, and no job. I've been on SSD for 5 years now, and damn it, I'll hobble and walk like a drunk as long as I can. Use it or lose it I tell myself.



So, I get out and about. I go to an art class once a week, visit galleries, go to the beach (when will these tourists go home?!) to the park with my furry monster, tend my flowers and orchids...I try to stay busy, occupied, integrating my life and illness.




Here's one of my favorite games:


When waiting in line at the store, or in an elevator, or any one of those moments of awkward silence with a stranger, inevitably the other person, noticing my dependence on my cane will say something about it. It's usually something like, "I just got rid of my cane after my auto accident/knee surgery/hip replacement." " Did you hurt your knee/hip/whatever?"


I know I should tell people I have Multiple Sclerosis.
Right?
Educate the public....NOT.
I have replied with that answer. It's not the answer they were looking for.
They wanted to identify with me...not be puzzled or scared by the possibility that that could happen to them.
Inevitably, when hearing that answer, before I can elaborate, they shrink away. Ewwwwwww, maybe it's catchy!


So my new game is a quick, jaw dropping answer. Here are a few....


"Rock climbing accident last summer....just now getting back to normal."

"I was parasailing and the rope broke. I crashed hard into the gulf."

"I used to be in the roller derby."

"After this last injury, I'm giving up mud wrestling."

Then hobble away, concealing your smile.

Saturday, March 29, 2008

Happy Birthday!



Posted by Picasa
Bubbie's daughter turns 30!
Here's wishing her a wonderful day. She has always been a source of joy and pride . Now she is not only a terrific daughter but also a great mom.
Note to the birthday girl: Hope you like the picture. It took me longer to finish than I thought and didn't get shipped out with your other present.

Thursday, March 27, 2008

EARTH HOUR 2008







My son sent me this link. His company is participating, as are many others as well as entire cities across the globe.



This may be short notice, the hour is set for this Saturday at 8 PM for whichever time zone you are in. ( No need to calculate as in Cheese-Chat)



Check out the official web page and video's that are sponsored by the World Wildlife Fund and the National Geographic at : http://www4.earthhourus.org/ and help to reduce your human footprint...


So, the Bubbie asks you to join me Saturday night. Turn off your lights, TV, computers, light some candles, relax and read, get together with friends, or just your favorite someone for an hour. Just don't be making more babies. Not that Bubbie doesn't love babies, it's just that (if you watch the second video) you'll be multiplying your human footprints. That means countless gallons of milk produced by countless herds of methane belching bovines, trucked endless miles to your supermarket, along with the diapers that came from countless trees, trucked hundreds of miles that eventually add tons to your local landfills and on and on.... That kinda misses the point, at least for this one hour. Have fun, but not THAT much fun.




Monday, March 17, 2008

still painting





I'm still painting.






(In case you thought I was being indolent) I have been good to my word.


I thought this piece was finished, but alas I have scrutinized it and realise that it needs more. The negative space on the bottom right is annoying me. Something will have to appear there.


This watercolor piece is larger than my previous postings of artichokes and florals. It measures 15" x 30".


I have 3 others in the works and will neglect blogging until more is accomplished. I have a problem you know where it comes to budgeting my time and keeping with my prioritized tasks. So, forgive me, and I'll be back soon.















Amazing Weekend






I had the most relaxing, amazing weekend!


I feel so blessed to have such wonderful caring friends and supportive family. I was invited to join three gal pals to spend the weekend at a fabulous cottage on Boca Grande.


It could not have come at a better time. Last Monday I had called my doc's office to tell them that I was experiencing double vision (well one and a half vision). This came on the heels of my week of physically paying for my mulch-madness gardening faux pas. "Promptly", as usual, I received a call on Thursday afternoon from the nurse telling me the doctor wanted me to go get a MRI that night or Friday morning at the latest and then get myself to the hospital for the first day of a three day Solu drip. I informed her that I was feeling fine, (better than last week) seeing clearly (at least only one of everything) and that I had plans that didn't include being hooked up to an IV of steroids for three days.


So, I agreed to the MRI for crack of dawn on Friday morning and told her I would wait for the doc to read the results (that could be a week from now) and make decisions from there about meds or treatments.


Well, the weekend was wonderful. It was so restful that it felt like a week of bliss. I was surrounded by the company of good friends, amazing gardens, a beautiful beach, and staying in the lovely cottage home of a wonderfully generous couple that I haven't even personally met yet. Many thanks to all.


Sooooooo much better medicine than a three day drip!

Wednesday, March 12, 2008

The newest member








As of today, there are 50 days left on my "next grandbaby ticker" at the bottom of the blog page.



The official due date is May 1st. The time has flown by for me, but I'm sure my daughter in law has a different perspective.






They sent me the 3D sonogram pictures yesterday. Isn't that amazing? They didn't have that cool stuff when I was having babies.






The big question is: Boy or girl????






The pictures were taken as to not let anything slip into the frame and give us a clue. The parents have said from day one that they want to be surprised.






Bubbie has been crocheting in blue long before the conception was announced. I believe it will be a bouncy baby boy. I'm even going to predict a birthdate. April 27th.
Anyone else want to take a guess?
I'm so excited..I'm going to be a Double Bubbie!

Monday, March 10, 2008

MS Awareness Month




Awhile back I posted a video that was made for MS Awareness. Check it out if you haven't seen it. It was made in a shopping mall and passers by that were interested in what was going on came by and agreed to using props designed to simulate what it feels like to have MS.




Along with some of the props there were goggles smeared with Vaseline. Rubber gloves to wear while attempting to button a shirt, and a large physical therapy rubber band to wear around both calves to try to walk with, and dry macaroni to put in one's shoes.




Well, in kicking off MS Awareness month I agreed to volunteer at one of these tables last Saturday. I met two very nice women with MS , one with a precocious 10 year old daughter who had been to MS camp several times and was very informed on the subject.




Besides the props for the "experience" we had pamphlets and info on the coming walks and rides as well as all the general information on Multiple Sclerosis.




And we chatted amongst ourselves, and we sat...and sat...(well I did, I'm still hurting from mulch madness)


There were many people in the mall that day and we were positioned between the big anchor store and the food court. As people walked by I sat ready to make eye contact and smile...ready to offer a pamphlet and chat.


They walked by, quickly glancing at the table and then quickly moved away, on their particular mission, avoiding ALL eye contact. We weren't asking for donations! Were they afraid of us? One with a cane, the other with a rollator. I believe that they quickly assessed that we weren't giving anything away and moved on as if we weren't there. Even when I managed a nanosecond of eye contact with one and gave a cheery salutation it was made clear that we were invisible.


One of the ladies was bolder than I. She got up with some pamphlets and walked around the food court introducing herself to the mall diners. She wasn't always received well, but she persevered and managed a few conversations and one volunteer for our "experience".


We were (not me personally) interviewed and shown on our local news channel, but I was so disappointed at the reception we received at the mall. Maybe we needed a better presence. A large banner for our table, orange balloons we could have offered the children, orange rubber bracelets, maybe some ben-gaye for the geriatric crowd....Something!
The cynic in me is saying that most people don't really give a crap about anything unless it effects them personally. And I'm happy that it doesn't.

Sunday, March 9, 2008

Friends

Miss Cheese posted that she had this song in her head. I'm betting it wasn't this version, but I always liked Joe's rendition. I just had to look it up on UTube this morning and hear it myself. Maybe I resonate with his passion and obvious spasticity. LOL











She made me think this morning about how grateful I am for all of my wonderful friends.


Along with this thread, I am also reminded that we should treat ourselves as well as we treat our friends. So many times we might find ourselves going out of our way (a good thing) for a friend in need, but often won't do the same for ourselves. My friends offer me patience, time and encouragement. I often don't allow myself the same. Let's say it's time to get over that.

Friday, March 7, 2008

Carnival of Bloggers







We are not alone. There are so many wonderful and interesting people out there in the blog-o-sphere, writing about life and living with multiple sclerosis.


Lisa, the creator of the Carnival of MS Bloggers (see side panel) has painstakingly put together this great list of links . Check out a few that you are not already familiar with and leave a comment on their blog. If you are a blogger that isn't on the list, please drop a line to me or Lisa and introduce yourself.
Join the Carnival.










Names of the Blogs - Name of Blogger (if known)
and # of posts in 2008 (as of 3/
5)




9 Brand New MS Bloggers joined the blogosphere in 2008!!





New! Carole's MS Blog (Carole) 49


New! Great Mastications (Orla) 37


New! Movin' On with MS (Sammie) 26


New! Me, Myself and MS (Emma) 10


New! Being Ammey 8


New!Blogbuster (Daniel) 6


New! Etsy Crest (Shelby) 6


New! Serina's Blog 5


New! I'm Beating MS (Michael) 2





Most Prolific MS Blogger - so far in 2008!!


Jim's Deep Thoughts (Jim) 231





Top 10 Rather Prolific MS Bloggers - so far in 2008!!


A Stellarlife (Diane) 109


Multiple Synchronicities & Sclerosis (Merelyme) 90


Friday's Child 70


My Journey - Living Well with MS (Diana) 69


Sunshine and Moonlight (Kim) 65


The MonSter Ate My Branes! (Natalie) 65


Queen Mediocretia of Suburbia 60


Brass and Ivory (Lisa) 56


Brain Cheese (Linda) 52


Maybe I'm Just Lazy (Julie)51





28 Moderately Prolific MS Bloggers - so far in 2008!!


Maggsbunny (Maggie) 48


Living with Multiple Sclerosis (TC) 47


MS My Way 43


Bugs, Bikes, Brains (Shauna) 39


Dancing with MS (Lazscott) 37


Trying to Catch My Breath 37


A Florida Journal (SwampAngel) 35


Now We Are Six (Tish) 33


Reality Check (Michael) 32


Access Denied (Herrad) 31


Multiple Sclerosis Blog (Charles of MSBpodcast.com) 30


MS Activist (NMSS) 29


Self-injecting Chinese Hamsters since 2007 27


Shirl's the Girl (Shirley) 27


Disabled Not Dead (Anne) 26


Life with MS (Trevis) 26


Living with MS (Blinders Off) 25


White Lightning Axiom - Redux (mdm) 25


Stevers! 23


Word Salads (Have Myelin?) 23


Danieldoo (Vivian) 22


Caregivingly Yours (Patrick) 20


Deo Volente (Lisa N) 20


Down the MS Path (Vicki) 19


Do You Have That in My Size? (Denise) 17


Jenn's Nook (Jenn) 17


Fingolimod and Me (Jeri) 16


Human Life Matters (Mark) 16





51 Mildly Prolific MS Bloggers - so far in 2008!!


A Life of Learning with MS 15


Behind Blue Eyes (Zee) 15


Katy and Mike's Adventure (Katy) 15


Living Life as a Snowflake (Sharon) 15


Mandatory Rest Period (Kim) 15


MS Maze (Mandy) 15


My Journey with MS (Christina) 15


The Multiple Sclerosis Companion (Pat) 15


'Tis Herself (Kell) 15


A Short in the Cord (Joan) 14


Blindbeard's MS Blog 14


Bubbie's Blog (Cathy) 14


One Crazy Chick (Chris) 14


Pat's Pond (Pat) 14


Rants and Musings (Cutter) 14


G and K's Mom 13


MS Toolkit 13


Newly Diagnosed with MS (Andrea) 13


One Life (Stephen) 13


MS Not Just a Diary (Doug) 12


Rayne's World (Jayme) 12


Chaos Personified 11


My MS Journal (Jaime) 11


Purely Patsy (14 yr old Patsy) 11


Victoria Plum - Technician! (Victoria)11





26 Less Prolific MS Bloggers - so far in 2008!!


Broken Clay (Katja) 10


Mark Pickup (Mark) 10


My Chain Driven Ride through Life in Alaska (Michelle) 10


Deborah Does Navel-Gazing (Deb) 9


Funky Mango's Musings 9


Inside the Mind of a Squirrel 9


Living Well with MS (Michon) 9


No Time for MS (Courtney) 9


Sorting It All Out (Michael) 9


Travels With Lucy (Virginia) 9


MS Caregivers (Prudence) 8


Can You Hear Me Now? (Donna) 7


Irreverence is Justified 7


Multiple Sclerosis Notes 7


My Tysabri Diary (Lauren) 7


Chris Has MS (Chris) 6


Diary of MS X (7 Divas) 5


Electrical Disturbance (Stephan) 5


Know Multiple Sclerosis 5


MS in the OC (Frank) 5


MS News and Notes (Deb) 5


MS Recovery Diet Blog (Ann) 5


The Endomorph (Ruth) 5


The Jaws of My Life (Jaws) 5


Time to Deal with MS (Homer) 5


YodaMamma MS & More 5





38 Barely Prolific MS Bloggers - so far in 2008!!Some of these folks have multiple blogs or co-blog and are loved none-the-less!! Let's help spread the love and let them know that WE know they are appreciated.


Carolyne's MS Odyssey (Carolyne) 4


Defeating Illness (Chris) 4


Intent, Context, Perception (Chris) 4


Libbi's MS Journey (Libbi) 4


MS Recovery Diet Blog (Judi) 4


My Autoimmune Life 4


The Life & Times of Sancho Knotwise (JM) 4


The Zen Pretzel Trick (Zen Angel) 4


When it's Raining... (Keeley) 4


Kebenaran - The Truth 3


Montana Homecoming (Sister Jane) 3


Ms Quill 3


Reality Chick (Keli) 3


Catch My Disease (Lisle) 2


Clods and Pebbles 2


Dissonance 2


Georgia MS Advocates 2


Lazy Dog Public House 2


Looking Forward with MS (Pamela) 2


Surviving MS in Alaska (Michelle) 2


These Pretzels Are Making Me Thirsty (Trrish) 2


Troy's Multiple Sclerosis Experience 2


You Me and MS (Judi) 2


Camille's MSadventures 1


Comment Column (Virginia) 1


Erik's MS & Lyme Blog 1


Hop Bloody Hop (Philip) 1


Jenn's Journey with MS (Jenn) 1


Living with MS (Cyndee) 1


Mismorphic's World of MS 1


MS Musings 1


MS Real Life Stories & Issues (Kristin) 1


Postcards of My Life (Sherry) 1


Rebooting Times 1


Shoester (Doug) 1


The BS of My MS (Heather) 1


The Perseverant Pincushion (Trish) 1


Tysabri Help (Deej) 1





Having too many items from various posters to count:


LJ Users with Multiple Sclerosis





And finally - 26 MS Bloggers who have been silent in 2008!!


Angst on a Shoestring (Gina)


Dandelion Wine (Lynx)


Doug's MS Journal (Doug)


Imagine Bliss Butterfly (Suzy)


It's Not All in My Head (Optimist)


Just Above the Abyss (Heidi)


Life with MS , seeking a cure (Karyl)


Managing MS with Tai Chi (Joel)


Managing Multiple Sclerosis


MarciaritaMichele's Blog


Mike's Place


MS -My Scene (Virginia)


My Complications (Amanda)


My Demyelination (Tina)


My MS ExperienceObject of My Injection (Michelle)


Say It Isn't So (Mouse)


Talk Story with Kimberly


The Great NetXperimentTo Be Continued... (Jaime)


Truth and Beauty (Baraka)


Tryin' to Imagine Bliss (Suzy)


What is MS to Me (Dave)


Willy's MS RantsWind Among the Reeds





Hard to categorize:


I Have MS (Tim)


Huggins' MS Pages (James)


MS - A Personal AccountMS Protocols (Jeff)


MSB's Podcast


MSing AroundMultiple Sclerosis Blog and News


Multiple Sclerosis Sucks


OUCH!


It's a Disability Thing


Squiffy's House of Fun



Thank you for helping to build a stronger MS Community

Today's Mantra



Please!

This is ridiculous. A couple of hours of yard work (see Maven of Mulch entry) on Monday and I'm still paying for it on Friday? No fair! My legs and arms are weak and shaky. When I sit still it appears like my muscles are playing ping pong with each other or else have a funky beat they are dancing to. I wake up in the early morning hours (shank of the day) skrinching funny faces and grimaces of pain as soon as the 225 mgs of Lyrica wear off and the tizanadine lost it's ability to keep me in coma.

Not to worry, I'm not depressed...I'm pissed off! There are things I want to do.

I should give a plug here to Sue since I swiped her work for my blog pic today. A very nice woman I met at the farmers market a few weeks ago.A talented lady who makes these arty collages on t-shirts, pillows, cards and more. Of course I had to own one. She uses many fun quotes and phrases along with vintage looking fabrics. Check out her web site.


Thursday, March 6, 2008

More Birds








Not all of our birds are pink.




The white peacock was just strolling in the shade.This snowy egret posed for me while the great blue heron made a run for it. It was a beautiful day , very relaxing and enjoyable. I'm still hurting from my mulching madness, but now I have plenty of reference to amuse me while I recover.




I've been playing tourist in my home town. Funny how people who have lived their whole lives near a major attraction have never been there. I've known New Yorkers that had never been to the Statue of Liberty, and friends here in my town living within 10 miles of the gulf and haven't been to the beach in years.

Wednesday, March 5, 2008

Flamingos





No gardening for me today.
So I went with a friend to take reference pictures for future paintings. We went to the local tourist attraction and took pictures of all sorts of wildlife and tropical scenery. Today I will share the flamingos.
Their image has been plastered on every possible kitschy souvenir item imaginable. I have seen new and vintage ashtrays , jewelry, picture frames, refrigerator magnets all adorned by the not really pink, flamingo. ( Or maybe that's just my disturbed optic nerve talking)

Posted by Picasa

Tuesday, March 4, 2008

Maven of Mulch

"Argue
for your limitations,
and sure enough,
they're
yours."



That quote is from "Illusions. The Adventures of a Reluctant Messiah" by Richard Bach.


Maybe I still fall back into denial. After all this time I still have trouble with acceptance. I am willfull. I am stubborn. I am proud, independent and damn it to hell...I have a progressive disease that causes disability.

I don't want to limit myself. I don't want to give up. "Fake it till you make it"rings in my head.

But I do curtail some of my desired actions knowing my "limitations". For instance I stopped going to the farmers market two weeks ago because of the outrageous influx of the snow bird population. I "walked" shoulder to shoulder through the throngs of untanned people wearing socks with their sandals. I found myself stumbling through the marsh of people with my cane in my left hand, my purse strap over my shoulder and my Eco shopping bags in my right hand being tripped by people coming up faster behind me with their right foot between my left and my cane.
Can I go downtown to the market? Sure I can... But, is it a good idea?

We have been having wonderful weather and I love my flowers and my garden. I love playing in the dirt. I love being outdoors on beautiful days. (hell hasn't broken lose yet. The temps are divine) On my way to the grocery store I stopped at the garden center of the local mega hardware store for much needed mulch. (have you already figured the ending of this story?)
Surely this superstore has a stock boy to run these bags out to my trunk. After I was handed my receipt for what I would soon learn to be tons of mulch and a few new posies I couldn't resist, the lady in the orange vest told me no one was available to help me. I was to help myself. OhhhhhhhhKayyyyyy.....
Should I have protested? Gotten angry? Played the wimp card? (lady with sad eyes, pout and cane)
I did neither...I took my shopping cart to the outside area with piles-o-mulch bags, picked them up and loaded them two at a time in my cart, pushed them to my car, loaded them in my trunk, and repeated the process. Precarious as it was, I did not fall or lose my balance.
Proud of myself, I drove home and unloaded the bags to a new pile in my yard.
That should have been the end of my mulch tale, but NO...I had to get back outside and play. I weeded, planted and mulched, and was thoroughly enjoying every moment of it and the sense of accomplishment.
Sure enough, almost three hours later, my zen of gardening alpha state was rudely interrupted by a harsh reality. I was on my knees and could not get up.

" Brain to legs, brain to legs....come in legs. Are you there?"
"Brain? Is that you? You're breaking up. We've lost power!"
"Brain to arms, do you read me? DO-YOU-READ-ME?"
"nahhhh...I don't think so"

I did eventually get up, but not without wondering what I was going to do if I couldn't. I made it inside and to the top of my bed where my hubby found me when he came home. A half dose of tizanadine kept me there, dazed and spasm free till evening. Hubby left for work this morning and I was admonished in the voice of Seinfeld's soup-nazi. "NO GARDENING FOR YOU!"

I felt good, willing and able to perform the task I chose. I enjoyed doing it.
Can I work in the yard? Sure. Should I? Of course I should. Should I limit myself before my body protests?
Will I ever learn? ( I don't think I want to)

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