Monday, December 29, 2008

'Tis the Season....

NOT to be unwell.

Just as poor Joseph heard that there was no room at the Inn for he and his very pregnant wife, don't expect a doctor in South Florida to have an opening to see you until the snowbirds all fly back north.

In this vacation paradise (and I use that word loosely) our population begins to explode as soon as the first frost settles on the northerners' pumpkins. Of course the population that can live in both worlds is made up of the aging baby boomers, who along with their age related ailments bring the dreaded snowbird flu. They come down to play golf, tennis, walk on the beach, play bridge and fill their specialists' appointment books for their host of chronic ailments.

What that means for a permanent resident like myself is that if you become unwell during the holidays with anything short of having to be rushed to the hospital while they prepare your toe tag, you will wait for the next available appointment. You might be resurrected around Easter.

Friday, December 12, 2008

It isn't easy being GREEN !

It isn't easy being GREEN !

I try to live simply. I try to tread lightly on this earth. I changed all my electric light bulbs to energy efficient ones. I buy organic foods that are grown locally whenever possible. I shop with what is now suddenly trendy. I use shopping bags that are cloth or made of recycled pop bottles instead of bringing home more plastic bags.

When I was using injectable MS drugs, I was told by my county to just put the used syringes in a discarded detergent bottle and put it in with my regular trash. Syringes going to the landfill? In my county that's what they do. There aren't any provisions set up for medical waste pickup for incineration. Considering the many drugs that are now being perscribed that are injectables and the aging population of this particular county, I can only assume there is a mountain of medical waste in our landfill. It's not a priority for them to budget more money for separate disposal. Less than a mile away, the county to the south of me has many drop off points for people to take their used syringes where they will be sent for incineration.

Back to the bags...

As a responsible pet owner, I walk my dog and pick up after him. I have been purchasing biodegradable poop bags instead of using the plastic grocery bags that I no longer get and collect. On a recent rip to the mega health and grocery store I saw that they also have biodegradable kitchen and trash bags. They are made from corn. Pretty cool, but pretty pricey. It seems you have to have plenty of green to be green.

Then I looked at the company info on the back of the bio-green pet-poopy bags to see if there was a web address for possible future online purchases (saves gas) and was agast to see that they were made in China.

I know I have drain bamage, BUT does this make sense to you? I wasn't aware that China was a big corn producer. That's our big export. So lets follow this gigundous carbon footprint--------->

Corn grown in Iowa (maybe)---------->Trucked to the west coast of USA----------> Loaded on a freighter------------->travels to a port in Asia--------->travels by truck, rail or rickshaw to some interior city----------->made into trendy biodegradable poop-bags by child labor sucking corn dust ---------> bags are trucked,railed or rickshawed back to an Asian port city---------->loaded on a freighter--------> comes back to a US port---------is trucked to a distribution center------->is trucked to my local mega health food/grocery store where I pay way to much for it.

How's that for a Behemoth carbon footprint???

Tuesday, December 9, 2008


I'm a generous person. I'll share my toys, time , a meal, ideas, inspiration, money (if I have any).
We were all taught to share. Remember Show-and-Tell?
What I have come to realize is how uncomfortable it is to share my burdens and fears, even to those who genuinely want to understand and be of help. The closest I come to sharing anything about my life with Multiple Sclerosis is in the pages of this blog. It's safer here, anonymous, and I'm preaching to the choir in a sense.
Nearly everyday I come in contact with someone who believes they know what having this disease means only to find out within moments that they haven't a clue. I understand...I had no idea before this became very personal. Even with all the information out there, it's information that only those effected by the disease is looking to understand.
Do I inform them? Not usually. I sometime feel as though I should if only to justify my actions or more likely my inaction's.
Also, I have an enormous problem with what I consider WHINING. On the flip side, the world doesn't need another long suffering, silent MARTYR. So when I was alerted by Google of this MS post from the NY TIMES I was moved by not necessarily by what these MS patients said, but that they said it. Honestly and openly. I understand them, but unfortunately, I'm a member of the choir.

Friday, November 21, 2008

You don't know what you've got til it's gone

The Importance of the Opposable Thumb
The thumb, unlike other fingers, is opposable, in that it is the only digit on the human hand which is able to oppose or turn back against the other four fingers, and thus enables the hand to refine its grip to hold objects which it would be unable to do otherwise. The opposable thumb has helped the human species develop more accurate fine motor skills. It is also thought to have directly led to the development of tools, not just in humans or their evolutionary ancestors, but other primates as well. The opposable thumb ensured that important human functions such as writing were possible.The thumb, in conjunction with the other fingers make humans and other species with similar hands some of the most dexterous in the world.
That's the Wiki definition. Let me elaborate.

Try without using your thumb for example:

  • turning your key in the ignition
  • buttoning clothes or pulling up your fly
  • using a tweezers (my eyebrows become Neanderthal overnight)
  • signing your name
  • finding the correct change

The list goes on...I know from my own stupid experience.

I chopped not a slice, but a divot, from my thumb while making soup. Yes, it was chilly herein South Florida, all of 55 degrees, and I needed to make a large pot of soup. (I swear, this Martha-mode stuff is a seasonal disorder with me)

It the knowledge of the usefulness of the thumb from one's dominant hand isn't enough, try stopping the profuse flow of blood from one with your other hand. It was rather comical, and messy. So much for my soup.

In other news, I have completed my first week taking 4 aminopyridine. The first two days were rough. My head felt like a helium balloon. I was dizzy and every nerve that ever went blinky before was in full spaz mode. I even felt blue, out of the blue, so I knew it was the introduction of this new chemical compound to my brain.

And on the third day ( of course I'm going to say it!) She rose again!

Yes, amazingly. I felt great! I walked not only without dragging a leg behind me, my gait was smooth! While sitting or in repose, I didn't experience any of those myclonic herky-jerkies, and I wasn't fatigued!

It's been a week today, and I'm still not ready to give this capsule the credit for my renewed self. It could be the weather. It could be coincidence, or as in my case (LOL)...Divine.

I shall keep you posted.

Now , I have Miss Joni Mitchell in my head.

Wednesday, November 12, 2008

New MS Journey or New MS guinia Pig

Yup..I'm going to do it. I'm going to try a new drug.

Briefly, (for the benefit of the new MS bloggers out there that might have just recently tuned in) I have been off all drug therapies that are meant to slow the progression of the disease for a year now. My journey began with strong oral immune suppressants like Cellcept and Imuran. I was on Copaxone for a couple of years. I had no adverse reaction to it other than bothersome site reactions. I could have gone on taking it but my lesion load doubled in the last six months while on it. So, on to interferons. I hated them but gave it my best shot (pun not intended). My side effects were worse than the disease. I was miserable, but I kept trying different doses, different brands, animal and bacterial. After a year or so of that nightmare I decided to quit. The only other option I was given, if not pushed to try, was Tysabri. I just wanted a break from feeling miserable, and to everyone's surprise I have been doing very well without them. I have had my ups and downs but I have felt fairly stable.
I have had no new lesions during this time.I can't help but think that if I had been on a drug, the drug would have been credited with my success.

I've had a great year. I've taken three trips by myself to visit my children. I took a long road trip with my hubby. I've been active again in my interests. I have been painting, going out with friends and generally enjoying myself despite the MS.

Don't get me wrong. I still have MS. I do face the uncertainty of progressive disabilities. I think I've just adjusted to life with it better than in the past. I still have trouble with my vision. I still use an intermittent catheter. I have spasticity, tremors, TN, headaches, nerve pains, fatigue. I walk funny with a cane. I was listing to port all day yesterday. I'm either numb or in pain (never could understand how that is possible) and I get the HUG.

I was forced into unemployment and disability 6 years ago, so I don't have to push myself to keep a career or job. For me that means less cash flow and an abundance of time. I can crash, be slothful, or just basically go to hell and the only pressure I face is the one's I still tend to place upon myself. It would be a magnificent arrangement if not for the lack of legal tender and the plethora of unpredictable symptoms that come with my new daily life.

In a recent post I told you about my last neuro visit in which I merely asked about 4-AP. Unable to answer any questions about it, he wrote a script for it without any prompting almost daring me to try it.

I did my research with the help of Lisa at Brass and Ivory.
It looked promising to alleviate the nerve pain I experience with walking and general fatigue. I'm hoping it will help with all the twerpy paroxysmal symtoms.

I finally took the script to the compounding pharmacist in town. I was amazed! He knew nothing about 4-AP either, but spent more time with me than my neuro ever has, researching it and taking account of all the meds and supplements I take regularly. He wanted to look into it even further and vowed to call me back the next day with what he had learned. Amazing!
The only side effect that he was concerned about was the possibility of it raising my blood pressure. All in all it felt it was safe, ordered the needed chemicals and filled my prescription.
He gave me all the information including ammunition to use if necessary with my insurer, citing the prescription's Orphan Drug Status and FDA approval for use in MS and Spinal Cord Injuiries.

Today's the day. I'm staying put in the house. I took my first dose this morning. I'm monitoring my BP. When beginning any new promising drug therapy, I experience contradictory feelings about it. I'm hopefully excited that it will help with my daily quality of life and I'm leary of putting yet another man made chemical compound in my system. Yup, I feel like Alice.

Now if I could just get Huey Lewis out of my head....

Wish me luck!

Sunday, November 9, 2008

My God

I really wish my MS brain would allow me to remember the lyrics to this ditty. There have been so many times I have wished for these very words when confronted by friends, family and acquaintances who seem to stand "taller" , if you will, because...yes...they have THE answer, and it came to them from THE highest authority.

I have heard this on endless topics too! Recently some of those connected folks have made mention of such mandates that I should follow concerning:

  • My health ( Yes...if I had treated my body like the temple that it surely is I would not be afflicted or I must have sinned against Him /Her or If I only ate raw organic foods without faces I would surely be cleansed or maybe , I get it, I most likley have been praying to the wrong Him/Her)
  • My Politics. ( So, if my guy won and God's on your guy's side that must mean...OMG! Where's that handbag? We're on our way...should be a helluva ride!)

Monday, November 3, 2008


As I write this I'm experiencing what I refer to as "Silly Word Syndrome". Really...SCREAM? Maybe from the childhood rhyme, You scream, I scream, We all scream for Ice cream". Ok, I'm over it.

Enough about SCREAM, this post is about STRESS. 'Tis the season, apparently. Season's are all running together, it doesn't seem to matter. The fact that the holidays are right around the proverbial corner is just icing on the cake. We have personal illness, medical costs, relationships, finances, and on the bigger picture screen we have war, failing economy, bigotry, bias, intolerance...the list is too long.

Ask anyone with MS and they'll tell you that it's true, stress very often precedes a flare of symptomatology. Having the disease itself is cause for significant stress, and stress causes what?...more disease? Feel that hamster wheel spin. It's enough to make you...OK, back to that again: SCREAM!

I recently read a study on social/emotional stress and autoimmune disease. Of course the study was done on mice (poor mice). It showed that social stress levels elevates pro-inflammatory cytokine interlukin-6 and worsens autoimmune disease symptoms. Apparently their was this happy group of cohabitating mice. They all got along nicely. They had no stressers and life was good. They were injected with a virus that caused an infection that affected their nervous system similar to multiple sclerosis. Still, they got along and life was still good but now they had something like MS. Then the researchers added social stress. They introduced an intruder mouse. He must have been an alpha bully. Bad Ass Boss Mouse stressed the other once happy, stress free mice that now had compromised nervous systems. This new social stress caused a rise in the interlukin-6 levels in the brains of the once happy rodents and produced more severe MS-like symptoms.
The study went on to theorize that if a neutralizing antibody could be administered it would inhibit the body's pro-inflammatory response and reduce the MS symptoms. This could include anti-inflammatory drugs, excercise, antidepressants, omega-3 fatty acids, mindfulness , meditation, relaxation training.
Seems silly...why not just say no to Bad Ass Mice.

Thursday, October 30, 2008

The most important question

At first I briefly considered not posting this. Then I had to wonder why. I have been helping out at the local "get out the vote" headquarters. If you know me, you know where I stand. I respect your right to your opinion and expect mine to be respected in turn.
And...after all, this IS Bubbie's Blog! It's my soapbox, so I'm standing up!

Friday, October 24, 2008

back to the road trip

I had to pull out the vacation photos. Looking at them again brings back the good feelings. This spot was especially serene. We were at a cottage home on the Pamlico River. The last two pictures were taken from the ferry we took from Bath to Aurora, North Carolina.

Bath is a very quaint little town that is full of interesting history. It was North Carolina's first town, created in 1705. Bath was home to Edward Teach, aka Blackbeard the pirate.

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Thursday, October 23, 2008


I'm giving you all a break from my vacation pictures. I can't just sing "la la la everything is bright and shiny " today.

I'm just not feeling it.
I'm concerned.
I'm frustrated.
I feel saddened and helpless.
I'm pissed.

The state of this country's health care is not just a cauldron of political spit and the usual blather.
It's a sin, a shame, a pox on the asses of the donkeys and elephants alike.
Oh, I's all about the bottom line. Democracy being used as an excuse for runaway capitalism. Profits are privatized. The losses, well..they're ours.
Today, I'm tired of the losses. The loss of lives. Real lives. Real people that did what they were supposed to do. They worked, payed their taxes, kept insurance, and then faced what should not be an insurmountable hurdle.

A friend of mine called me this morning. She was diagnosed with breast cancer last year. She worked as a manager of a large chain store for many years. She had one surgery (which although major was treated as an outpatient and sent home the same day). Then another surgery to get what they missed the first time around. (ooops) Then chemo and radiation while out on term disability. Before her treatments were completed and she got a free and clear to return to work from her doctor, she had to return to work for at least 32 hours a week to continue to receive her health care benefits so that she could continue to have treatments and medical care.
But, I'm jumping ahead. While out on disability and receiving only a percent of her usual wages she was unable to pay her utilities and rent. All calls for assistance to the usual walk-for-this-or-that charities went unanswered. They had no funds to disperse for anyone in need. She lost her apartment, has no car, and the copays she owed the surgeon's and various doctors and labs went to collections too. She moved in with her elderly mother who barely manages on her social security. Now she walks to her job that she must keep whether she is up to it or not for her insurance.
The story isn't over....
Another lump. She was told she needs to go out of town for special testing, and see the surgeon again. She has no car. She has no sick time. She owes the surgeon from the previous surgeries.
She's tired. She feels defeated. She can keep walking to work, to keep her insurance and her paycheck until she can't and the cancer gives her fewer options than she already has.
Then there's me on the other end of the phone. What comfort can I offer? I can taxi her to appointments. Appointments that she sees no reason to keep and canceled.
She and I had a mutual friend that passed away several years ago from the same disease. I remember us both tending to her through her long ordeal. Now it seems like yesterday.

I urge you to look at this health care issue from a more personal perspective. Whether it is from a perspective of someone with a chronic condition like MS or someone fighting a diagnosis of cancer. Whatever your personal political leanings, and whatever your current health, this story could be yours, or your son's or daughter's.

Read what the candidates have to say on the issues
. Get out and VOTE. Demand CHANGE.

Monday, October 20, 2008

more from the road...


To continue the sage of my two week road trip, the first location we purposely made a stop at was Todd, North Carolina. You may not find it on your map. I only found one other reference to it on Google. This general store is about all there is to see except for the beautiful surrounding countryside. I had been there once before many years ago, and wanted to return.

From Todd, we went north to cross the state line into Virginia. Virginia's gas stations had gas, western North Carolina didn't most of the time. I had no interest in running out of gas on some rural mountain road.

The last two pictures in the previous post were taken on route 58 going east in Southern Virginia. A very pretty drive if you have the time to avoid interstates like we did.

I'll let you off the hook for the locations pictured in this post.The first is Clarksville, Virginia. We stayed on Buggs Island Lake. At this point we just relaxed for a day. Had a very nice dinner and walked the historic downtown. After driving all the curvy mountain roads it was a nice change to be back on flatter land. The only problem I had with the area is that it was totally devoid of cell phone towers. Everyone had to guess where we were and when we might be expected.

The next stop was Virginia Beach. The giant statue of Neptune is located at the board walk by 31st. It was a beautiful day to walk the boardwalk.
We spent a couple of nights there before moving on.

Now you may have noticed my new flagrant attempt at self promotion to the side of my blog. Yes, I have registered on Zazzle. I had designed the poinsettia painting to be reduced as a holiday card, so when a certain Ms. Fromage (today I'm French, just yesterday I was British) suggested I sell some things on zazzle, I went over to check it out. It would be nice to make a little extra moola from my efforts, so...oila! I'm zazzling

Wednesday, October 15, 2008

next stop...


The locations for the pictures in the last post were: Mount Mitchell State park, in North Carolina.
At over 6000 feet it had it's own weather system and I was unable to get any pictures that weren't totally in clouds.

The large red building in the valley is The Orchard at Alta Pass.
The picture was taken from the overlook on the Blue Ridge Parkway. You could hear the banjo music all through the valley.

Next stop was Blowing Rock. One of my favorite stops because of all of the fine galleries in town, also the best bisquit breakfasts I've had anywhere are at Holly's. I was happy to see that it was still there.

From this point on we had to be cautious about where we were going next, how far and when. There wasn't any gas to be found at the stations in western North Carolina. Just as well, it gave me more time to wander the shops.

Saturday, October 11, 2008

vacation stops 3 &4


Here a two pics each of the next two stops on our trip.

I have been getting reorganized (as if I ever actually was organized) now that we're home. Provisions to buy and cook. Clothes to launder and bills to pay.
Speaking of food, I miss eating out. All in all a delightful experience. There was not one "hairy" incident! Of course we stayed off the main highways and ate more at locally owned establishments than the famous chains that are always placed near the exits.

As I said, I took over 400 pictures in two weeks, so I have tons of reference material to draw from and I am anxious to begin painting again.

My health has been good. I've had no MS problems. Well, no new problems. I think I'm just getting used to what has decided to stay with me. The lack of humidity, and the cooler temps made me so much more comfortable. I did a fair share of walking, and very little of it on flat terrain.

Not shocking, and true to Bubbie form, I went to work yesterday for the Campaign for Change/Obama office downtown. I spent the morning making calls. I feel like I need to do some small part, given the state of the union. My speech was good, no stumbling for words and sounding like the village idiot. As long as I'm in good form I'll go back more next week.

Now for the answers to the last post....
The first stop was Chimney Rock. Personally, I don't see the resemblance to a chimney, but who would name it Pud or Stubby?
The second stop was the town of Burnsville. A cute mountain community with a downtown square that was having a quilt show when we arrived. Upon learning that it was a dry county, it quickly lost it's charm and we were off...

Thursday, October 9, 2008

vacation pics

and then...

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I'm back! We were gone two weeks. Our travel itinerary changed last minute due to a nor easter and then by the availability of gas at the pumps. All and all we had a great time, wandering through five states on the roads less traveled.

I took over 400 photos. For fun, I've decided to chose two pics from each interesting location and see if they are recognized by any of you loyal Bubbie-heads (all three of you).

To be fair I'll tell you that we drove from Florida and never strayed from states that had borders on the Atlantic. One of these days I vow to venture west of the Mississippi, maybe next year.

Tuesday, September 23, 2008

Road Trip!

I've had more than my fair share of flying this year. Hanging out in airports for hours awaiting a delayed or canceled flights is not something I want to do again in my foreseeable future.

I bought a new road atlas! Previously the one in our possession was small and most likely printed from surveys made by George Washington himself.
What about one of those new GPS's with the annoying voice? (my son refers to her as "the bitch") Hell no! Getting lost on side roads and finding the most unusual of landmarks is what we do best. You see the new road maps were purchased as a tease only. It will only be used if and when all other delusional senses of navigation leave us totally stranded with the faint sound of banjos wafting in our car windows.

Exactly where are we going? I can name the state, but exact locations will only be revealed as we discover them. Hopefully the weather and the foliage will be all I hope it to be. Cool and colorful.

I am excited! I have but one anxiety over traveling by car - generic fast service restaurants.
Did I say restaurants? There should be another word for places strategically placed by highways, masquerading as places that serve real food.
First of all, I am a picky eater. No burgers! Ah yes..I'll have a portobella and swiss with honey mustard on a hard roll with a side of organic baby greens please.....Right! So after perusing the menu that features shiny happy people ordering stacks of greasy fat laden offerings, I usually order something presumably innocent, like a grilled cheese.

This would be acceptable if it weren't for my curse. Yes I'm cursed, ask anyone who has ever dined with me at places that sound like Waffle Mouse, Penny's, Emerald Wednesdays, and I Skip.

It has come to the point where we nervously start laughing the moment I give my order. We are anticipating the inevitable. My plate is served, I take an entrenching tool and carefully prod at my food as if I'm expecting it to jump and run away without leaving as much as a tip. And there it is. Always. Without fail. One of two equally disgusting and gag reflex producing things : Short curly hair(s) or tiny baby cockroach(s) that became seared to my entree by the grill.

Mind you, this is only on my plate. Whoever is with me will carefully then scrutinize their plate to find nothing amiss, except for the fact that it's cheap generic food.

This happens so often that I have a rehearsed specific dialogue for my server. After all, she/he was only the delivery person, and to my amazement has never had this specific complaint before!

Wish me luck.

I'll take lots of pictures and maybe even get some on site sketching done.
Check out latest watercolor in my galleria, Summer Croton.

Tuesday, September 9, 2008

I'm back and with a New Web Addiction

I'm back, and much to the joy of my furry creature.

He was pissed that I was leaving and camped out in my suitcase attempting to stowaway. I had a great time with my son, daughter in law, new baby girl, my daughter and her adorable 2 year old. We did the zoo, the parks, the university, and the pool. Also shopping, cooking and some hanging out. Love them dearly, but alas, I'm glad to be home. I crashed...knew I would, but nothing a little rest didn't fix.

So, my new web find...
No, I didn't find a new "liberal arts" site.

A friend turned me onto a site I love, and as an added bonus it doesn't keep me glued to the screen or the keyboard. I can keep busy at my desk or easel and enjoy it without even looking. (Unlike the hours that have been lost to games somebody's sister posted. You know who you are.)

The site is Pandora - The Music Genome Project. Intrigued by the title? I was too. Try it out. You log on, plug in a few names of your favorite singers or songs (even the obscure) and it begins streaming audio of music it chooses based on your preferences. If it plays something you don't like, give it a thumbs down, and it recalculates and plays something else in the genre of your choosing. You actually create your own radio stations, with no audible commercials.

I have one station that's mellow with ballads and folksingers and another one full of heinous rock and roll complete with trashy electric guitar solos. The oldies mix with the new. Folkies playing now...John Prine, Townes Van Zandt, Robert Earl Keen to Cat Stevens and Donovon.

I think music is therapeutic. I usually play CD's but my library is limited. I listen to public radio, but have to leave when they start playing polka or droning on about global warming or politics. ( I get my news from Jon Stewart LOL) My vinyl collection is huge, but changing the disc on the turntable isn't conducive to working, so this is a great find.

Speaking of working, I'm still at it. I completed two large canvases of Italian landscapes for a commission before I left. Sorry can't share, I don't own the copy was work for hire. Not a big deal, I was a hired brush, much like in my previous life. Money is good though, but I prefer to play on my own without fulfilling someone else's expectations.

I have three works in progress at the moment and will share when I decide one is done. (always hard to tell)

Sunday, August 24, 2008

One more for the list

Over the years I have heard of some very odd and some very bizarre "cures" for multiple sclerosis.
Here's a new one for the list.


Yup, the soap that gets you Zestfully Clean is the secret. Who knew?

Here's the story. My good friend works at a local health food store. I myself used to work with her there. (In my previous life). I think we have heard everything from the plausible to the absurd,even with some of the legitimate products we sold, but just this weekend a customer came in and told her his secret. She couldn't wait to call and tell me. I mean, my gawd, forget the doctors, IV's, meds, needles and PT...there's ZEST!

Apparently, this gentleman, has suffered from MS for many years, but more. He places a bar of Zest soap at the foot of his bed, under the bed linens, and that, my friends, has taken away all of his pain and spastisity.

I must admit, this call could not have come at a better time. It was Saturday, and for me not a good MS day. I had been lying about all day with the BubbyHubby eating Lortabs (plural) and watching the Olympics in Beijing. I had just experienced an event that brought about an extreme event of my favorite neurological symptom. The Russian women were performing the routine that won them the gold medal in synchronized swimming, and I reacted with an agonizing attack of Emotional Incontinence. I was laughing so long and hard that it really really hurt, and that of course was enough to keep me going long after the medal ceremony.

Then the phone rang with my friend, dying to tell me (she couldn't even feign a straight face) about Zest.
"You've got to be kidding me", I spit into the phone .....
"No, I swear, he was dead it or something!"

Well, I did, and the Google Gods did not respond. Nothing, Nada, zip!
So here for all future Googlers to come...the Zest cure for multiple sclerosis! You saw it first here on Bubbies Blog!

Guess that leprechaun lied when he told me about Irish Spring.

Wednesday, August 13, 2008

4 WHAT ???

That's what I said.

I had my neuro appointment last week. It went well considering. I have no new lesions despite refusing disease modifying drugs. My doc again pushed his vision for me to use Tysabri, but more gently this time. (most likely because of lack of evidence of progression on my films)

What are we considering?

As I waited...and waited, for the doc to enter exam room 3, I began reading a free booklet called Living With MS. Just before I was greeted by Neuro-Man, I was reading a passage about drugs for symptoms of MS fatigue and symptoms, especially brought about by heat. This of course caught my eye because I live in South Florida. Heat is one of my major obstacles, and the drug I used previously for fatigue was not tolerated well and had a new FDA warning on it. The drug that was being discussed was Aminopyridine or 4-AP.

I had never heard of it. That surprised me considering I thought I had voraciously read everything about MS in the first 2 years of my diagnosis, and have been practically OCD about checking all that Google reader has alerted me to.

So, after exchanging small talk about nothing new in my head, cervical spine or thoracic, and describing my symptoms as SOS, I asked about this 4-Whatever, that I had the little book dog-eared to.

"Oh.." he said, "I have a (note the singular) patient on that and she does well with it. Want to try it?", as he wrote on his prescription pad.
"How is it different than Provigil, what is it and how does it work?"
"I don't know."


As a rule I like when doctors admit that they are not the all knowing all seeing deities that they often portray, but this was unsettling.
"You need to get it from a compounding pharmacy." was all he said as he handed me the script.

It kinda reminded me of a time (decades ago), when someone (not in a white coat and usually at a concert) said, "here try this."
"What is it? What does it do?"
"I got it from so-and-so, she really digs it!"

I came home and excitedly Googled this new little pill.
I found :

4-aminopyridine (also known as 4-AP and Fampridine) is a drug that blocks the potassium channels in neurons. This effectively improves the transmission of nerve impulses down damaged axons. It does not replace damaged myelin but users of 4-aminopyridine report dramatic improvement in a number of symptoms especially paraesthesia. It should be born in mind that this is an experimental drug and the side-effects are uncertain. Dosages should be carefully regulated as potassium is a chemical that is used extensively in other parts of the body including heart functions.

Agriculturally, 4-AP is used as an extremely effective bird poison sold under the brand name Avitrol. It is highly toxic to all mammals including humans if dosages are exceeded, and, as an experimental drug, recommended dose data is unavailable.

A slow release formulation of 4-aminopyridine is supplied by the Irish drug company, Elan Corporation, and is currently being tested by Acorda in two phase II trials in the US. It is currently awaiting authorisation by the US Federal Drug Agency (FDA).

I also found that Lisa, at Brass and Ivory had recently written about it and had many resources listed. (as usual, Great Job Lisa! )

So...what does the Bubbie make of all this? Hmmm, a bird poison? Not FDA approved BUT I can get it from a compounding pharmacist? How much do you take, and when? What's the difference between what I can get from the druggist and what is in clinical trials and not yet approved?
Potassium? Isn't that essential to important things, HEART? Side effects? Will birds treat me like Tippi Hedren? ( Was that her in THE BIRDS?...MS brain fog)

Way too much to think about now. I'm going on another trip to see my kids next week. I'll return to my investigation next month.

Meanwhile, feel free to comment on whatever it is you know on the subject, as I am too confused to ponder and too old to say, "Cool! OK!"

Sunday, August 10, 2008

more words...

It's been 7 months since I began painting again.

I had to look back and find the WET PAINT post to see when it actually began. The truth is it actually began with the well sown seeds of caring friends who were obviously tired of hearing me bemoan what I used to be and do, by reminding me that I still am who I've always been. They could see that what I had closed off from myself, bottled up and put on a high shelf, was stifling me. It was a void that cried to be filled, and I had the power to allow it all along. I certainly have the time.
I have to say that I don't believe it's a big co-inky-dink that I have been so asymptomatic through this time. I have been off all DMA's since last December. I use Lyrica and and pain meds as needed. I have had flares of symptoms here and there, possibly from the heat or overexertion, but they didn't get me down long. My MRI's have shown no new confetti. I have been more physically active. I have traveled. I feel like I have regained my sense of self. My attitudes are brighter. My attentions have shifted from the unwanted to the desired.

My palettes are wet, multiple easels are in use, my flowers are blooming and I have been very busy. When the damn of self expression gives way the torrent can be jarring and even unfamiliar.

Recently I've been writing more words. I posted one once before that surprised me as well. I don't know if they qualify as poems or lyrics, but I do recognize them as being self portraits in a sense. More so than a picture of pretty flowers or fruit in a basket. I must be holding back. I think it's time to REALLY let some paint FLY.

I have no title for this : ( probably out of fear of really revealing the entity you know as Bubbie...LOL)

I can never really know you
But I recognize your soul
The bridge between our worlds is damaged
dangerous to cross.
I lose myself on my way to you
A sacrifice unholy.
A prize that leaves me lacking, a meal that weakens
and a discordant song to dance alone.
Both the fool on my shore or your bank
I gaze across the expanse
I grieve to know you built it unknowingly
with all the rotting planks of lies
and words sharpened with razors from your desperate wrist.

Saturday, August 2, 2008

August Blooms

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I needed some re-potting supplies and just had to go to my favorite orchid greenhouse. I knew before I went that I wasn't going to be able to leave without a new baby. I never can.

The white one is the one that HAD to come home with me. It's scent is so delicate and beautiful.

The one pictured in the center was my gift to myself last year. It's only the second time it's bloomed for me, and has two more clusters of buds waiting to follow.

I seem to be amassing quite a collection. It only seems to be really evident just how many I have when it's necessary to take them down if a tropical storm threatens to blow them and us away.

So far so good this year. We've been very fortunate.

Geeee...I wonder if I need to go back and get some more plant food?

Tuesday, July 29, 2008

Christmas in July

Have you looked at the calender? It's almost August! Back to school shopping has begun. Soon you will see Halloween candy displayed on the store shelves, and before you know it, it's Christmas.

Every year, somewhere post Turkey Day I swear that I will get a jump on my holiday shopping "NEXT year", I swear it! Regardless of my good intentions, my memory is short. I end up scrambling for those perfect gifts that I thought of, searched for and then bookmarked months before often purchasing something entirely different at the last minute.

I also start to think about what I could realistically make for holiday presents. Please...something besides the frenzy of mixing and baking. I'm thinking of printing sets of note cards. I'll let you know if that pans out.

I make a point of buying things that you can't get in a big box store. I don't want to fuel the Asian economy. I like handmade items. I like to shop local farmers markets, ebay and etsy. I have found fun t-shirts and clothing items, handmade soaps, and these one of a kind birdhouses that are made by a very good, artiste friend of mine.
Take a look and see what you like. Maybe you'll be inspired to avoid the last minute holiday frenzy.

Sunday, July 27, 2008

Proud Bubbie

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Exactly one year ago, I posted about the little one that gave me my blogging moniker. She was very intently decorating the sidewalk with chalk.
As you can see she has grown, and she has expanded her skills in more mediums. Here she is happily exploring her new set of watercolors.
That makes me one proud Bubbie!

Thursday, July 24, 2008

VERY orange vandas in watercolor

Another watercolor on Masa (rice paper)
Trying to "loosen up" by beginning with a poured/sprayed and spattered upon background and then looking for what it suggests and then coaxing it out. Only the bright orange color gave me a clue on this one. Someone else may have found something entirely different. I'm still enjoying the rice paper. It has a totally different look feel when applying paint.

Keeping the momentum going and trying to make at least one new mess a day has kept me busy and relatively healthy.
For one, it's been keeping me busy indoors where my a/c unit keeps my body temperature from rising and my nerves from shorting out. It's been a typical south Florida and humid! A new nerve (well, I'm sure it's always been there) has made it's presence known after I spent too much time out in the sun. My Trigeminal Nerve. If I could imagine it a thread, twisting inside my face, I'd find a fray of it and rip it out.

Just for fun I'm posting 3 more loose/spattered/shmooshed backgrounds that are waiting for me to figure out what they are to become. So far, not much has emerged. See what you think. It's like watching clouds go by and seeing what they resemble, or a Rorschach test to see just how twisted you really are.

Sunday, July 20, 2008

Cognitive Dysfunction ?

I adore Tom Rush, and when a friend sent me this video I had to post it.
I'm sure the causes are probably VERY different but the effects are much the same.
Still you have to find the humor in it.

Cognitive Dysfunction is one of the more scary symptoms of Multiple Sclerosis. It used to be thought that cognitive dysfunction was relatively rare symptom of the disease but it is now understood to be quite a common feature.

Saturday, July 19, 2008

works in progress

More work in progress. I'm still playing with loosely applied backgrounds of watercolor on rice papers. These are just in their beginning stages. They are at the point where you really don't like them and wonder where the hell they're going. My plan is not to become too invested in the outcome and fearlessly explore the possibilities. I'm having fun.

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Thursday, July 17, 2008



I have still kept up with my promise to continue painting. I've had several events lately, besides MS that have sidetracked my efforts. Even so, I have several works in progress. This particular one was an experiment with painting oriental rice paper (masa) with watercolors.
Now that I know how the paints react, I'll be trying other subjects and styles.
If you look at my "galleria" you can see that I have been playing with many different styles of painting with watermedia. I hadn't painted in many years, and almost NEVER painted for the plain and simple sake of creating. I always had a commission, an art director or designer dictating what I was painting and what it was to look like. Yes...I was a prostitute, an art whore.
Well, now...thanks to my abundance of time, my inability to work and my monthly check from Social Security, I am free to explore all creative possibilities.
It's really quite daunting. It's one thing when you are pleasing someone else, another when the blank page is yours alone.
I am enjoying this journey of self discovery.

Thursday, July 3, 2008

At My Door

I am not a writer of prose or poetry, but these words seemingly wrote themselves with my own hand while having my morning coffee one day last week.

It has been almost a year since I began this blog, and I have been reluctant to write about MS and how having it effects me on a level any deeper than in silly metaphors or laughs and digs at the doctors and drug companies.

So, on the almost birthday of Bubbie's Blog, I'll share this with you.

At My Door

I removed myself from you
Played a game
It's all a game
Led you to a faraway place and
Left you there
Locked myself away to stay untouched
still scarred, un-knowing you

I heard you many times
Knocking at my doors
Rattling my windows

Wearing the mask of normalcy
I turned my music up
Closed my eyes
Busied myself in the days and
Drugged myself in the nights
Anything to deny you
To make you a distant memory

But you are always there

Like quicksilver you seep into my safe haven
Waiting for me as I wake
Inserting yourself in my days
Making me question my tomorrows

I can't run from you
Wish you away
Disguise myself or surround myself with anyone who does not know of you

You are undaunted
Unafraid of the weapons and arsenals given me for my protection
I hear you laughing
Can you feel me weep?

Saturday, June 28, 2008

cheap meme

For lack of any original blog material, I took the liberty of following MR. MDMHVP>>whatever his name is' lead with these questions. You'll have to ask him what happened to number 31. Maybe it was censored?

More cheap meme cruft:

Welcome to the new 2008 edition of getting to know your family and friends. Here is what you are supposed to do, and try not to be lame and spoil the fun. Change all the answers so that they apply to you. Then [send this to a bunch of people you know, INCLUDING the person who sent it to you] post it. Some of you may get this several times; that means you have lots of friends. Have fun and be truthful!

1. What is your occupation right now?
I occupy myself with painting, blogging and caring for my furry monster. I just can't seem to find anyone to pay me for that.
2. What color are your socks right now?
I almost always barefoot
3. What are you listening to right now?
the sound of my very noisy dishwasher
4. What was the last thing that you ate?
5. Can you drive a stick shift?
Love to double clutch
6. Last person you spoke to on the phone?
My mother in law, inviting her to dinner.
7. Do you like the person who sent this to you?
Seems like a good guy, inspite of his lean to the right
8. How old are you today? 50
9. What is your favorite sport to watch on TV?
can't pick just one.Golf, Tennis , hockey and gymnastics
10. What is your favorite drink?
Gin and Tonic or a dark imported belgian beer
11. Have you ever dyed your hair?
Puleeese? I raised 2 kids and I'm 50, what do you think?
12. Favorite food?
anything with pasta
13. What is the last movie you watched?
NO memory...wait, maybe...damn, I forget.
14. Favorite day of the year?
everyday I'm up and moving
15. How do you vent anger?
I throw food.
16. What was your favorite toy as a child?
was I a child?
17. What is your favorite season?
18. Cherries or Blueberries?
I'll take them both
19. Do you want your friends to e-mail(blog) you back?
good as any blog fodder.
20. Who is the most likely to respond? no clue
21. Who is least likely to respond?E
22. Living arrangements?
Resident Martha, studio artist, wife, long distant mom, bubbie, and my furry creature's human.
23. When was the last time you cried?
holding my newest grandbaby for the first time.
24. What is on the floor of your closet?
too dangerous to open and find out.
25. Who is the friend you have had the longest {that you are sending to}? my daughter
26. What did you do last night?
walked furry monster, cooked dinner and vegged in front of the tv
27. What are you most afraid of? honestly...
I try not to fear, but probably being a burden to my kids in my old age.
28. Plain, cheese, or spicy hamburgers?
NO COWS!!!! veggies please.
29. Favorite dog breed?
lovable rescue mutts
30. Favorite day of the week?
32. Diamonds or pearls?
why not something with color? sapphires, rubies, emeralds.
33. What is your favorite flower?

Friday, June 27, 2008

Bubbie's cell phone to the rescue!

I have been hemming and hawing for years..."I don't need a damned cell phone!" Something stuck in my pocket at all times, being wired everywhere all the time. I hate when I see people eating at restaurants, shopping in stores, seemingly talking to themselves...always on those blasted phones. They never seem to be in the NOW, oblivious to the world and people around them, connected and lost all at the same time. My argument has been, "I have a land line with voice mail, a computer with email and instant messaging, what can't wait till I'm home?"

Well! With what was obviously Divine intervention, I NEEDED that damned phone in an emergency situation, less than 24 hours after I was activated. And it was Bubbie to the rescue!
The bad guy is in jail, the young lady is safe at my home for now, and I'm waiting for that Divinity to come swooping down again with something other than a cell phone to help me out with what to do next.

It's a somber/sticky situation.
My very best friend in the world was this gals Mom. She, a single mom, was sick for quite a long time and passed away at a very young age of cancer. Her daughter, (The damsel in distress) had just turned 18 at the time. I've known her since she was a little girl and indeed the young woman has problems that have never been addressed. Of course I promised my friend on her deathbed that I would do my best to watch out after her babe. And here we are.

Here's hoping the man behind the curtain has something more in his bag for me than that blasted cell phone.

Wednesday, June 25, 2008

Welcome Bubbie to the New Millenium

I've lived 50 years without a cellular phone.

Every year when a hurricane comes within 500 miles of my home, my children worry and fret when they can't reach me on my land line.

When I was stuck in Nashville Airport till the wee hours waiting for a connection (see Feel The Luv) that was the last straw. It was decided that I would be getting a cell phone. I was told it was long overdue that I join the new millennium.

I received it in the mail yesterday from my son-in-law with instructions for activation.

Well, I'm activated. I still don't know what all the buttons are for or what they do, but I can be reached now, and I can call for help or consolation if I happen to be stuck somewhere again.

And...I can always turn it OFF.