Blog

Blog

Sometimes we face challenges beyond what we thought we could handle.

All I can do is share my story. please forgive the writing… words aren’t my first language…thats why I paint!

 

click here or up top on blog to hear about my latest adventures and interviews

Go Fund Me

Posted by on Apr 15, 2017 in blog | 0 comments

Go Fund Me

The winters here are mostly rain and the rain fluffs the moss up on the tree trunks, the green in the Redwood grove we’re nestled in comes alive. It’s truly something to behold! The campground is open but with the rain very few people stay the night. Mostly they walk through the Giant trees on the trails during the day. So Keith, the dogs, me and all the woodland creatures have the whole place to ourselves.

Keith is on his fourth novel and is really wonderful with the Park visitors. They all love him and when I bump into someone they say “oh are you Keith’s wife?” with excitement. He seems to have found his niche.

For me, not only is my body healing but my spirit and well…all of me is. I’m finding my voice with my art and I feel safe and alive here. I’m able to go deep and let what needs to come up and out do so and feel like I’m being held by the loving environment. I had no idea how strongly the death of my parents had effected me. Here I am able to see and nurture the wounds in a safe environment.

We leave the Redwoods on my birthday April 27th to go up to a Coastal Paradise in Mendocino. We are there for only 4 months through the summer heat. (the redwoods get too hot for me in the summer.) Then we come back here for the winter.

Keith’s in the process of getting all the tests to rule out all the Parkinson’s alternatives. Keith himself thinks it’s simple nerve damage.

As for the Go Fund Me…I am working with the shame of having to ask. I love our little camper. I painted it and made it very homey but the climate here is melting the structure. It’s wood is rotted. So here we are…we may possibly make it one way to the next camp but in four months we need to return to the redwoods and it is not going to survive another rainy season in the woods.

I appreciate the Prayer and the donation very much. I know Prayer works. I absolutely no idea how this camper will make it on that windy hilly road on 4/27 or back here in August. Yet I know it’ll be as it should be. For now I’m trying to remember to breathe and put one foot in front of the other.

Latest Interview about me and my art

Posted by on Nov 12, 2016 in blog | 0 comments

Latest Interview about me and my art

What media do you work in?
Usually anything within reach. You do the best you can with what you’ve got.
When I was touring with the show Stomp (in the crew not a performer) we always stayed in the best hotel rooms. Often for a week or more at a time. We had to travel light so I brought a bag of art supplies, spot remover and a screw gun. One of the first things I would do in the hotel room was to flip over the hotel art and paint my own picture, (some frames were screwed to the wall). Of course I would return them to their normal state when leaving. In fact you could say I have my art hanging in many of the best hotels in the world…they just don’t know it.
The most unusual medium I have used was probably an incense stick and nail polish. It tuned out to be one of the most striking pieces I’ve done.

What is it about those media/that medium that you enjoy?
I enjoy variety and discovering new ways to do things. That is why I shied away from a formal education. I didn’t want to be too influenced in my direction and growth. I wanted to find my own way. I think it sometimes makes people uneasy the range of work I do. In the case of Lake County Wine Studio the Director Susans first words to me were “I love the variety in your work!” That is the first time a Gallery has praised me for this.
Lately though I find myself more drawn to oils. I find something about Oils on Board or Canvas very fulfilling.

How long have you been creating art?
Since I can remember. My father was the local Barber in the small town of Lockport, NY I grew up in. He had a studio behind the barbershop where he would paint. I always remember him doodling cartoons. I probably started to mimic him. In my teens I began doing portraits. I found peoples eyes fascinating and would do the portraits just to be able to draw the depth in someones eyes. I began doing commissions at the age of twelve. My Mother worked with the sister of the Shah of Iran. This was in the 80”s and his family had been excommunicated and fled to places all over the world. I remember her being very sweet and wanting a picture of her Mother and Father together so she gave me two photos and explained it was forbidden for them to be in the same photo. She was so please she commissioned three more for her family overseas.

Did you study art?
Not formally. I joined a class on Life Drawing for the use of models. When I lived in NYC I joined an abstract painting and sculpting class at the Art Students League of NY. I never met the teacher…there wasn’t a “class” it seemed you just show up and use the studio which was brilliant and inspiring all by itself.

In her press release, Susan Feiler wrote that you spent a lot of time on the road in the music world. How did that influence your art?
Yes, I was in the music industry most of my life. Traveling with bands on tour and many hours spent in the recording studio. I was so blessed to be surrounded with such amazingly talented musicians and performers in my life. I’m not sure I can do justice in describing the effect music has had on my art and life. I’m certain I wouldn’t be alive today without music. However in my life it wasn’t just the transportive power of a Miles Davis song that influenced me. Music has brought me all around the world meeting people and cultures I would never have known existed. It has had such a profound and humbling effect on me that I am forever grateful.

Susan also mentioned that you were diagnosed with MS, yet you continue to create art.
When I was first diagnosed with MS I had completely lost all function in both hands and my left leg. I wasn’t sure I would ever regain the use of my arms. It was scary. Yet there was never a moment when I thought oh no I can’t make art now. I’d find a way. My thinking was if I had to throw myself like a fish on the canvas I would and would never stop making art.

How does your diagnoses affect your work?
It has been a great challenge. Especially since we had to move from the heat of the desert to the Northwest and have been living in a small camper in many diverse places. Its not so easy to just go to my studio when I have an urge to paint. I have to work with the conditions and environment of where we are. I usually start the day exhausted so finding the strength to get a space to work created, gathering materials, creating the work and cleaning up sometimes feel impossible. Some people say take it a day at a time. I take it a minute at a time…with many breaks and ice packs.

What inspires your artwork?
Life. Being alive. All that that encompasses. sometimes fear, sometimes joy. Sorrow or strength maybe that’s why my work is so diverse. All I know is I need to express it. For many many years I would throw my work away. I believed it was the process of expression that was important not the end result. I was afraid the critiques of the end painting would influence my creativity so I would throw it away as not to be dissected. I was in Brighton England in a Pub and an actor Steve Spears, who had been typecast as an big oaf/bouncer astounded me with his intellect quoting Blake and in no hesitancy told me “shame on you!” He said you were given this amazing talent to express yourself how dare you keep that to yourself and not share it with the world? It is not yours to keep, even the ugly stuff could help some poor sod out”. These words have stuck with me and I stopped throwing my work away.
I want to be clear though. Life is what inspires me to sit down and create. Once I am there, in that place I lose myself and the work creates itself. Call it God or Muses or whatever you feel comfortable with…but I know I’m just a small part of the creation. Especially when it’s good.

I know many artists have a message in mind when they make a piece. Does your work have any kind of a message?
I didn’t set out to, anyway, but recently I sold a piece to the well known photographer Lenny Foster. He bought it as a birthday present for his young son. He wrote me telling me how he had hung it in his room at night so he would wake to it. He described the boy being so excited and lit up, throwing his arms around him. He described how he will grow up being influenced by the piece as he ages…first seeing the colorful images then the depth of colors then the geometry…I couldn’t imagine a more rewarding compliment than to be entrusted with such an honor as inspiring someone’s child. After I read his email I realized that is it. To lift or inspire someone else with my work. Personally it’s an expression of me. Others resonating with makes me feel I am not as alone as I sometimes feel.

What’s the process behind your work? How long does it take you to make a piece?
Sometimes years, Sometimes moments.
The process is like something Bob Dylan said. Its like going out on a pier and casting out the line. Thats really all you can do.
There have been people who have sat with me when I paint that commented I made 9 paintings since I sat down at the one canvas and they had wished they had switched out a blank canvas each time.
In short I”m not sure I know.

How did you choose what to display at the Lake County Wine Studio this month?

My husband, myself and our two dogs Monkey and Monster have been volunteering these last few months at Hendy Woods a Redwood State Park. It’s off the grid and majestic. I have been working on these pieces in a small tent under these enormous ancient trees. Being in this environment has helped me to create the variety the art you see at The Lake County Wine Studio.

Is there anything else you want anyone to know about your artwork?

I don’t get enough opportunity to acknowledge the strength and inspiration I get from my remarkably talented husband Keith Basham. Not only does he help me when I need to find my balance physically or metaphorically, he is always there for me. He is a great writer, visionary, scientist and comedian…he has been an incredible source of strength and support for me and my work. If you want to see some undiscovered brilliant Science Fiction go to Amazon and get Keith Basham’s Attenuation series and you’ll see what I mean.

Nestled

Posted by on Jun 13, 2016 in blog | 0 comments

Nestled

Nestled in a safe place. Our new friends at the rabbit hole have graciously welcomed us to share their wonder & beauty in a tranquil lakeside orchard in California while we decompress and make a new plan. I don’t know how many times I can say it but I am so grateful for the kindness and love life offers.

As for the plan…well all we really know is the Multiple Sclerosis does not like the heat and it tells me by shutting me down. Brain turns to goo, legs stop working, hands close into compressed balls of uselessness, and the varieties of pain ensues. It’s something I wouldn’t wish on anybody.  We’ve already hit triple digits and the ice packs and air conditioning saved me again. Keith got an inflatable swimming pool and kept in the shade I can drop into it when I begin to shut down.  How incredible it is to watch my body reanimate by being submerged in cool water.

We’re thinking the Coast since its averaging 70 degrees or maybe up in the Puget Sound area of Washington which we have yet to explore. Considered going back East which would be wonderful because my brothers and sisters live there in NY. That just seems out of reach when its difficult for us to get as far as Washington at only an 8 hour drive.

One things for sure we are tired of living in the camper box and we are ready to settle…only the question of where.  For the moment we are wonderful and I feel safer here than I’ve felt anywhere in a long time. I’m working on a 7′ x 3′ oil on canvas commission and that means blissfulness. Keith is editing his books and painting an oceanic mural. I’m hanging my art in a local venue and things are looking up.

Meds

Posted by on Mar 11, 2016 in blog | 0 comments

Meds

Still up on top of Mt Ashland & it has been a constant adventure.  A couple days of sunshine brought a siege of ticks and all other sorts of army bugs and critters. The last few days harsh winds, rain, snow, hail, sleet…I’m beginning to think mountain life is not gentle in any way. Even when the sun is out it’s an angry vengeful & burning. We’ve decided living in our lil camper for 2 years might be enough and mountains too. We’ve been searching for where we might go next.

Health wise I got some things that definitely need attention.  The MS symptoms are still going strong, I’ve had a frozen shoulder for 6 months now and something called endometriosis happening in the girly region. I’ve done my darnedest in my stretching and self massage and physical therapy I found on the internet. Eating as best I can with vitamins, supplements and health shakes.  Seems pretty clear I could use some help. A body of water to soak in would do me wonders. Fresh fruits and vegetables. A physical therapist that could show me how and what my body needs now. Still searching for a functional medicine doctor (an MD that treats the whole body with diet etc) who can help me put all the pieces together.

I haven’t taken any pain medications in a long long time. I’ve been relying on turmeric and any form of CBD I can afford.  Relying most heavily on Music and Art. Listening to music and making Art. probably wouldn’t be alive without those two medicines.  My art studio however has been challenging with the ever violent weather. Alas, I will not quit.

Wintering

Posted by on Dec 29, 2015 in blog | 0 comments

Wintering

Here we are up on top of Mt Ashland in Ashland Oregon. Still not real sure how we got to this place. I think it was a combination of affordable rent & a longing for nature & privacy through the summer months. We really didn’t think we’d still be here through the winter months (cause thats just silly) The hope was that my tent would act as an art studio & Keith would have the quiet to write his books. The art studio was thwarted by the triple digits of summer & when fall came I had 1 good day to work where I got 10 pieces done but the next day the wind completely ripped the tent to shreds. However Keith has been prolific! He completed two incredible books in his Attenuation series & is putting the finishing touches on the third as I write this. I am so proud to be married to such a brilliant writer. His work is absolutely groundbreaking & brilliant. I am in no way biased of course…but you can see for yourself here:   Attenuation Books

At this time we’re still not sure where the future will bring us…so we are taking it a month at a time.

As for my health…well I seem to be getting stronger & less pain. I’m on a pretty good regiment of Isagenix nutritional shakes (for vitamins & minerals thats hard to get up on a mountain) exercises & the mountain solitude allows for much introspection. My last MRIs showed the lesions are healing & soon I know I will be fitter than a fiddle.

The downside of the solitude of the mountains is I miss my family and my friends. Our phone service is sketchy at best but I do have email and Facebook so thats a blessing. I hope this finds all of you happy and healthy. On Christmas we will toast to you.

and now some photos of the world we find ourselves in.

 

Monkey is no doubt the happiest here…at least now that there’s snow.
He loves to swim and to him this is swimming on land.

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Monster however is happiest in the desert

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So here is our humble 20’ x 6’ dwelling. We hope when we do find a place to call home we will be able to live in something a bit more spacious. For now it has been a pretty swell thing.
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Besides creating his masterpieces Keith has been keeping us safe & secure as the King of this mountain (don’t tell Monkey)
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It has been a bit like the pioneer days. Great in many ways…yet I really really do miss my washer & dryer. I’ve been using a tub & a washboard I look forward to the day when its just a musical instrument.

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weather has made drying the laundry a bit of a challenge.
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I’ve been remodeling the inside of the camper
including a chalkboard fridge that Keith & I can doodle on.
Here’s our Christmas theme.
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note how Keith captured Monkey & Monsters personalities so perfectly (monsters burrowed under blankets until spring comes.

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Our Christmas tree is a bit smaller than usual
but it has roots so we will plant it come spring
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Meanwhile we have a winter wonderland
of trees to admire
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Keith took these pictures of Monkey & Me this morning

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Very interested to see what the next year will bring!

I can of mine own self do nothing

Posted by on Sep 2, 2015 in blog | 0 comments

I can of mine  own self do nothing

By our own power, we do nothing; even in loving, it is Love that loves through us.

Yesterday, I had 3 back to back MRIs of my brain, neck & spine; both with & without contrast. There’s lesions (tears) in these areas. that’s what causes the neurological trouble. The MRIs show if they’re getting better, worse or staying the same. I have 3 more tomorrow. I feel a bit beat up at the moment. I’m not sure why.  Maybe its easier to be the mixer than the batter (for lack of a better metaphor)

I’ve spent the last few days contemplating chronic pain. It’s an interesting and quite common thing to suffer from chronic pain. I found the only way to live with it is with adamant gratitude for the blessings in my life. This probably doesn’t make any sense. It’s certainly a bit tricky to find things to be thankful for when you are suffering. It’s against almost everything we are taught.

I’ve often felt like the MS challenges have been a trial of sort. Maybe it’s more that it’s molding me in a different way. Being forced, in a sense, to give up the past and everything I knew. Accepting who I am now, even with its limitations. This is not always so easy. Even surrounded with people who love you it is a scary and sometimes an isolating journey. I think Joseph Campbell would compare it to going into the belly of the whale. That part of the myth or legend where every hero must battle their dragon on their own.  And that’s the catch. There’s no such thing as on your own. It’s only when we surrender that we can slay the dragon.

Life is funny isn’t it?

Volcano says Go

Posted by on Jul 21, 2015 in blog | 0 comments

Volcano says Go

2 months now that we’ve been living on this mountain. It’s been an awakening of the Pioneer resilience. The elements, wildlife and what you call Nature seems to have been trying to kill us since we got here. In between there’s been grand moments of remarkable beauty.

It seems we have painted ourselves into a corner financially. Unable to find online work to help (as we had planned) We are putting all our money into the rent, food a gas. I had a dream the other night that we went shopping at Whole Foods and were able to buy anything we wanted. I got Kale and lots of fresh veggies. I awoke so struck by the fact that Im fantasizing about kale.

On the upside being so isolated Keith has finished his second novel, THE LUCKY ONES in the ATTENUATION Series…it is absolutely a classic sci-fi work. I am so proud and I know that one day he will be recognized as the great artist he is. (I do hope its in his lifetime)

The weather has been brutal since we got here. Mostly in the 90’s and many weeks of three digits. The Multiple Sclerosis Foundation sent me a portable air conditioner and a cooling vest which I believe has saved my life. The air conditioner had to be replaced twice probably because its refurbished. I felt so terrible for the fed ex guy having to come up this mountain 3x. The second time his truck broke so he was here a few hours. Keith said he seemed more upset that we didn’t have weed for him cause apparently everyone that lives up in these hills has a marijuana farm.

We got ourselves a big tent intending it to be my art & yoga tent but the sun has bee to angry to let me go in it for more than 2 minutes (even with a cooling vest) At night the wind blows 20-40mph and the tent is being thrown around like one of those tubular clowns in front of a used car lot.

Today the water went out. Don’t know why. Its from a well. This might be bad. Don’t know how bad yet.

We came to the North West to get away from the brutality of the desert sun. Heat exacerbates MS (which is why the MS Foundation and the like jump at the chance to help keep us cool) We had no idea it got so hot here. Our lease on the mountain is up in November and we were looking at heading to the Oregon Coast or up towards the Seattle area. Then we read a New Yorker article claiming theres strong evidence that the entire North West Coast will be falling into the ocean. Everything west of the I5….where we sit atop a volcano. so yep time to come up with plan B.

My appointment with the Neurologist was awful. He was rude and short with me. Had no interest in talking with me and after 3 minutes said come back in 6 months and we’ll order an MRI. A week later when I called for a letter from him for the MS Foundation stating I had MS he refused to do anything unless I came in for another appointment. (luckily I was able to get a hold of my old neurologist and they confirmed it for me so I was able to get the cooling equipment) I did get a notice from the new neurologists office saying all my information is on their website. I logged in to find that according to the doctors notes we spent 60 minutes in depth conversation reviewing my symptoms and possible treatments. Seems he’s covering himself and has no real interest in anything but the $300 a visit he gets and not getting sued.

One of the things I was most looking forward to in coming to Ashland (besides the mild climate) was they had a wonderful Functional Medicine Clinic with several doctors that even accepted Medicare.  Functional Medicine Doctors are Doctors who have practiced in Western Medicine  but also use forms of Holistic Medicines and practices. Treating the whole body using Nutrition and Exercise as well as Western Medicines when needed. I’ve been looking for a good one since Dr. Terry Wahl wrote to me about getting one. (easier said than done)  When I called to get set up with them they were full up and not accepting new patients.

Same thing happened when our little dog monster got caught in some barbed wire. I called three local vets who told me they were not accepting new clients. I didn’t even know that was a thing! I thought your dog got hurt you bring him in…nope. Can you believe three vets refused an injured animal because they have too many dogs coming in for check ups? So adding it all up seems Ashland isn’t right for us.  Its a very sweet place that just seems to be overcrowded. Luckily we did our best keeping the wounds clean and bandaged and they healed up nicely.

Once again Im hoping from a sign from God on where we should go next. I expect that things will get better here once the Sun calms down a bit. Maybe the next 4 months I’ll be able to work in the tent and make some of the best art I have ever made. Keith is continuing to forge ahead writing and if nothing else the world has received some masterful writings from him in this adventure.

Into The Woods

Posted by on May 21, 2015 in blog | 0 comments

Into The Woods

We finally found a place to settle, well for at least the next 6 months. This is a photo of where we will be setting up camp.

Living campground to campground has been stressful even in the most beautiful place. With summer coming the city is hanging no vacancy signs all over the place.  The place we found is amazing.  50 acres on top of Mt Ashland, the nearest neighbors… a Tibetan Buddhist Monastery.

Cheaper than most campgrounds and way cheaper than renting a house…it will still be a challenge to meet each month. The landlord lives in Seattle and has lots of work on the land for Keith to do and has agreed to do some trade. It is a perfect place to write and paint too. I just need to figure out a structure to set up in. Theres an old shed on the property or maybe we can get a big tent.

Our main concern is the heat. It’s not Tucson weather but we are up on top of a mountain and the locals say that it gets in the triple digits come summer. We don’t have air conditioning in the camper so that’s gonna get tricky. We hope that’ll only be for a week and maybe and can set up a tent down by a pond and dip in a lot. We are industrious so I think we’ll survive.

I feel myself getting stronger and I know being so deep in nature will have a good influence on me. It’s about an hour to civilization on a grueling winding steep gravel road so there won’t be many trips to town. Today is my first appointment with my new Neurologist so we can check that off the list.

Im so excited to be in the woods for a while. YAY!

We made it to Ashland, OR.

Posted by on Mar 18, 2015 in blog | 0 comments

We made it to Ashland, OR.

We have settled our camper for the next 2 months in a little forested campground nestled between a river & endless rolling green hills. Many factors have decided us to come to this area. Climate, healthy air & soil, functional medicine and did I mention the rolling green hills.

The air here is so clear and strangers are alarmingly kind. I feel as if I have returned to a peaceful land after being at war for years. The coast seems clear but it doesn’t seem possible that a tank wont be rounding the next corner ready to blow me away. I hope in time I will learn to relax and accept that we are in a good spot.

My health is in a very interesting place. I started a new diet in February. Breakfast and lunch supplements & some vitamin packs am/pm it’s called Isagenix. I figured it’d save me money & it would be more efficient w/ all its nutritional value. I think of it as an astronaut diet. Already, I can feel my body transforming on deep level. My heart rate as been regularly 120-130 bpm for many years now.(I think normal is 70 bpm) doctors had me on all sorts of things for it & nothing helped…now its 65-70 bpm I can hardly believe it. I still have lots of ms pain & symptoms but I think in time those will fade too. I do believe my flare ups have lessened considerably, I haven’t had a relapse in a while and I catch myself doing things I just couldn’t do even a few months ago…walking further distances and even riding a bike!

We’re looking for a studio/barn/space where I can paint & we can live. I had a great response to the art I had in “Portlandia” & at the Gallery in Portland. I have only a very few pieces of original art left. Very exciting to have my art be so popular. I cant wait to get settled and have a space to make BIG art!

Visually MS

Posted by on Dec 6, 2014 in blog | 0 comments

ms visualI watched this video today that was raising MS awareness by going to malls and airports and having people walking by put on some things to represent the way people with MS feel. The biggest problem with MS is you look just fine so people expect you to BE fine. and well that’s just not the case. The video is: http://msstationradio.com/the-show-must-go-on-multiple-sclerosis/

The flipper on one foot and high heels with weights on the other is a perfect example!. Spot on! Doesn’t include the pain but yeah definitely exhibits the balance issue. The big bulky rubber gloves are perfect for the fumbliness and numbness. Try buttoning your shirt or clipping your toenails!  They didn’t use a snake…they use a weightlifting belt and fastened it extra tight.

Another troubling thing is instead of being strong and pushing through the pain like people have popularized in heroic dramas and a lifetime of tv I have to be hyper aware of my body and its limitations (which are always changing) If I overdo it I pay by being down for the next day or week. I’ll tell you it’s a very humbling experience.

I never thought culturally MS could possibly be an issue. I have never been lazy or weak. In fact just the opposite. I sometimes think that this is happening to me so I will Stop. Just stop and look around. Breathe.

Whether I like it or not I have to look at myself, love myself and accept myself for whoever I am…unconditionally.

maybe that’s not such a bad thing?

Spoons

Posted by on Nov 5, 2014 in blog | 0 comments

Spoons

There’s been many occasions when Ive tried to express how I feel when I just don’t have the strength to do the simplest of tasks. Friends & Family alike look at me like I’m crazy and I’m at a loss for words. I came across this blog that says it. The Spoon Theory, a way to explain what it feels like to live with chronic illness. The basic idea is we start each day holding a certain amount of spoons. throughout the day we need to carefully decide how we want to use each spoon.

Taking a shower is a spoon used, going to get the mail, making breakfast, doctor appointment…hard to plan anything because if you have 5 spoons plan to use those and something pops up like say you drop a carton of almond milk and need to clean it up. oops no more spoons. Incidentally dropping things happens WAY too often with my fumbliness.

The days I paint are huge. I have to consider setting up. That is getting my supplies gathered. Then preparing the canvas, gesso base coats etc. Then the actual art happens. thats the JOY and best part. Then cleaning up the area and cleaning up myself. Thats about 5 spoons and doesnt include anything else for the day. Difficult but I gotta tell you I NEED to make art. It keeps me alive.

looking up!

Posted by on Aug 7, 2014 in blog | 0 comments

looking up!

I’m so excited…the neurologist says my MRI’s are showing signs of healing!
Some lesions have actually disappeared! maybe all the hard we have been doing is working. Keith & I are in Oregon pushing forward he got some writing jobs so some money is slowly coming in….still not as fast as the bills but I have faith it’ll get reversed.

So far we’re hopping campground to campground. very pretty. we’ll be in Rockaway Beach on the Oregon coast the next 2 weeks. The TV show Portlandia took all of my artwork and is using it on the set filming now through November, which is very exciting. They also want me to be an extra but Im feeling shy. theres Portland galleries that want my work and prints to sell.

We were also able to trade both our cars and $2600 worth of my artwork for a ’94 Jeep Cherokee. Amazing that a used car lot would accept art!

II need to get some body repairs done….doctors, Physical Therapy, acupuncture… we are looking for a somewhat long term settlement. hope we can find a plot of land w/ a little barn or some such structure that I can use as a studio as now I am almost completely out of original art to sell and now I really have a demand! things are looking up!

so close I can smell it

Posted by on Jul 15, 2014 in blog | 0 comments

so close I can smell it

I have come to the great revelation (that one I always knew and just remembered again) If i can get myself a space to paint it would cure me of MS & bring in all the money we need.  I’m not asking for much… Just a space where I can slop paint with some ventilation.  I have buyers who want my art, just need to make it.  I have the place in mind. A plot of land shaded by trees with an empty barn and a little crick…maybe even a pond. We’ll have the solar panels up in the camper and I can spread my wings in that barn and paint to my hearts content.

ahhh its so close now I can smell it.

We are in Hood River. Staying with Keiths Mom & stepfather Ed. They have been generous in letting us crash & recover from the travels.  Giving us love & support while I run around seeing doctors and we try and get in gear for our next phase.

Keith got a job writing for WikiHow….plus the sales of his ebooks rolling in.  I got word from the galleries in Portland they sold all my prints and need more asap and my originals are off to Portlandia for filming next week. Sadly we have no money to invest in prints at the moment.

The weather here has been unusual HOT. Its expected to be three digits this week and worse in August. After my neurology appointment this Wednesday we plan on camping in the Oregon coast for a couple weeks during the brunt of it.

 

…almost…

Posted by on Jun 26, 2014 in blog | 0 comments

…almost…

There are so many things the MS has taught me. I believe the most important being compassion. I truly believed I had a great deal of compassion before my MS diagnosis but I must say…I had no idea what it was like to live with chronic pain. Theres no way to know to what degree someone is suffering. There really is no gauge.

I have been told my whole life that I had a high tolerance for pain. On number of occasions doctors were perplexed at my ability to walk into their office when they believed I shouldn’t have been able to. But these last few months the pain has had me on the floor in a fetal position more than one occasion. I have referrals to a hundred different specialists & exams waiting to be approved by the insurance company (they’re estimating 3-4 weeks for approvals). Apparently the Obamacare system albeit fantastic for existing is just plain overwhelmed with its share of sick peoples. Makes sense.

Keith and I are still struggling to stay afloat financially. He continues to look for work and is currently in the process of obtaining some writing jobs.  This area is quite beautiful but pretty expensive to live. It doesn’t seem to offer what we need or want. It is a good place to recharge and reassess. We are eternally grateful to our family and friends who have supported us and continue to believe in us. Thank You.

 

Thank You Obamacare

Posted by on May 23, 2014 in blog | 0 comments

Thank You Obamacare

Yay! Im finally insured.

Today I had my first doctor appointment. He has me set up to see a neurologist this week.  After running in circles for so long I can hardly believe its really happening. I feel like Im in good hands.  Don’t worry I’m not going in blind. Now I know a lot more about bad prescriptions and doctors in the pharma pockets. I think I have a good balance now in understanding the extremes.  Mostly I do need the neurologist to tell me why my left side has been so weak and failing to do things I ask. …not to mention the pain.  Things are good.

We are pretty poor but spirit strong. The art seems to be loved by many here I just need a workspace to make more more more.

Things are good.

Follow your Bliss

Posted by on May 18, 2014 in blog | 0 comments

Follow your Bliss

Joseph Campbell always said “Follow your Bliss” I believe I’ve been following my Bliss my entire life. It just seems I’m always 10 paces or more behind it.  We’ve been in Oregon a couple weeks now. Staying in the Columbia Gorge area everywhere you look is stunningly beautiful.

Our first week here Keith stumbled into a gallery in a Portland mall while I was getting my computer tinkered with. He urged me up to it where I met a very nice man who represents many art venues and provides the art for the TV show Portlandia. Yesterday we brought everything I had to pick through. He took everything I had… paintings, scribbles, 1200 postcards of the art, buttons the record label had made of me many many moons ago to throw into the audience for the first Lallapalooza show (that dates it). He said some of the original art would be in the next filming of Portlandia so they won’t be available for another 3 months but I can sell them still and whoever buys them can watch them on Tv….which means I gotta get painting and making.

As for me and my body I’m about hurting everywhere and all the time. The application for the medical insurance somehow lost me in the system. Keith however got his cards and doctors info (go figure). Next week if its not sorted and I feel any worse I’m just gonna go admit myself into the hospital. Hopefully by then the stress of the travels and the rest will begin to reverse the pain and symptoms.

We still have to find a place to set up shop. We are looking for a space to paint. A plot of land with a barn or even just a plot of land where we can erect a tent to paint in.   As always we take things a day at a time. But I must say I can see things are beginning to get better and I know my body will follow soon enough.

My artwork being embraced as it has leaves me so hopeful and warm and fuzzy. Like I’ve finally caught up with my Bliss.

We Made It!

Posted by on May 9, 2014 in blog | 0 comments

We Made It!

Pooped but we made it. YAY

We go today to Portland to pick up our stuff and transfer it from the POD to a trailer for some extended storage time.  We are now staying at Keiths Moms. The camper is on the street.  Waking up to eggs bacon and homemade muffins YUM! (gluten free even)  I’ve already applied for Oregon Medical Assistance….now I wait.

Mainly taking it a day at a time now. Hood River is gorgeous. This whole area is stunning. Across the Columbia Gorge is White Salmon where Keiths sister lives up in the woods. We marveled yesterday at how the beads of water on the leaves looked like mercury they were so clean.

I’m ready to make some art!

Still in pain and can’t walk far but feel like the worst is behind us now. Its a new day.

 

To Tomorrow

Posted by on May 4, 2014 in blog | 0 comments

To Tomorrow

Nearly at the end of the journey from Tucson to Oregon.

We are now in Ashland and it is lovely with Shakesperean festivities and beauty all around the rolling greens. Tomorrow we head for the Hood River area. Where Keith’s Mom and Sister live. We may have to stay in Eugene (half way) for the night.  Our pod waits for us in Portland where we will need unload it in the next few days.  SO much to do….I really do need to see some healthcare peoples and soon.

I hope this doesn’t upset anyone.  I want to share this as it is part of my journey. I know this is the hardest part.

Albeit beautiful this journey it has been very difficult for me.  My body feels like it is having a MS relapse. My hands and fingers are weak and fumbly.  My left leg is all but useless most the time. I am unable to walk for more than a few feet without trouble. My brain feels like its only at 15% its normal function. Burning in my hands and my back like a furnace. I’m not sure if it’s because of the physical demands that come with traveling, driving and camping, the stress involved or just the diet and lack of vitamins. Most likely a combination of all of these.

I had to use a wheelchair for most the day on my birthday visiting the Exploratorium in San Francisco a few days ago. Its the first time Ive been confined to a wheelchair. It was difficult to swallow as a reality.

The hardest part has been that I am on the road traveling through the most beautiful places filled with nature and wonders to behold and I am distracted by the pain. Unable to do as I please. I mean I am enjoying it as much as I can…but it’s like I am enjoying what I can of it from inside a tank of angry goo.

Camping is not what it used to be and not at all what we had anticipated. Even State & Federal parks are charging between $25-$60 a night to stay and they’re packed…every place is full or nearly full.  There seems to be no free place to stay. Even the Walmart parking lots we’ve encountered have a no overnight policy. Maybe it’s just where we’ve been or maybe we’re missing something.  Car troubles and wow the cost of gas…yikes.  How do all these people do it?

Please forgive me. I don’t want to complain. Im frustrated. I know this will pass.

We’ve been eating a lot of brown rice and living simple. I have not been eating as well as I should, I have not been exercising because the pain and exhaustion, I have not been taking my vitamins and supplements as they have run out some time ago.  I have been unable to make art because we have to keep moving or the body pain or just exhaustion.  I’m sure if I was more disciplined I could manage to pull off more exercise, art and meditations daily.  It just seems like the rules keep changing. My body is not the same two days in a row. When people say listen to your body. My body is always yelling.  Its like trying to find an arsonist in a forest fire.

I have already applied for medical assistance here in Oregon. the paperwork is waiting at Keiths Moms house. So hopefully I can get the ball rolling on that in the next few days and get in to see some healthcare folks. Get on track again.

 I am grateful for all the support of my friends and family. I couldn’t have made it this far without you.  Oregon is as loving a place as I had hoped it would be. I think the future will be better.  To Tomorrow.

on our way again

Posted by on Apr 11, 2014 in blog | 0 comments

on our way again

With the help of my wonderful friends we got some criscare donations that has gotten us up on our feet again.

Admittedly we’re not very good at calculating the gas & auto fixes that we are coming up against. It looks like we are on our way though.  We got some dried foods and more rice. (which we will not store in a glass container) We also found a place for me to get a Disability Pass for State & Federal campgrounds so we can stick to those for $5 a night. The place up by Napa is a free campground we can stay at for 2 weeks. So the plan is sleep on the beach the next three nights then head to the free campground for 2 weeks. Eating dried fruits & nuts. I think we should be OK. Next stop Big Sur.

trouble in paradise

Posted by on Apr 10, 2014 in blog | 0 comments

eek. We’re down to about $18.

Car troubles and unexpected hurdles have eaten into our funds.

We have a free place to stay in Napa valley for 2 weeks. Just not enough gas to get to Napa.
Were mostly out of food. I have some vitamin packet food supplements and Keith has a few packs of ramen.

We had a big reserve of rice but it broke and is filled with glass….jostled in traveling.

In hind sight probably shouldn’t have spent the $8 to go to the double feature at the drive in, but didn’t know we were in such trouble.

Please send prayers and any ideas you can think of to get us through the next few weeks.

Earp!

Posted by on Mar 31, 2014 in blog | 0 comments

Earp!

Almost a month now and we’re still here on the Colorado River in Earp, CA. Unexpected expenses etc. Funny that a month later we’re just 8 hours away from Tucson. wasn’t so long ago I used to drive cross country in 3 days.  There’s no hurry like when I was 20. I can’t remember why there was a hurry then. Oh. I was with a band and needed to soundcheck…a different life entirely.  The heat and Sun are still pretty mean here. It’s been in the 90’s & gusting winds up to 30 mph. But every once and a while there will just be a few minutes or even hours of the most brilliant calm. Perfect temperature, quiet and everything is good.  Life is Good.

I’ve been getting some painting done and Keith has been writing and writing which is wonderful to see. He just released his very first book “Attenuation”.  It’s $5 only available on Amazon Kindle for now but its still very exciting and if I may say so without prejudice it’s quite a good read! (you should go buy it)

As for me and my MS or whatever this thing my body is doing. Well, I’m feeling pretty wrecked.  Burning down my back and palms of my hands has been worse than usual. Fatigued, weakness in my legs, hard to walk at times, constant pain in various places, general yuckiness.  I’m thinking it’s still recovering from the big month of packing and moving. That was a big mountain.  I think as time progresses I’ll feel better. I have been off my wonderful diet since traveling…without a fridge its impossible to keep any greens in this heat.  I am waiting for the arrival of some Shakeology packets which has loads of what I need. I hope this will help speed the healing up.

Next week we head out. All we know is we’re headed towards San Luis Obispo. Probably won’t make it the whole way but definitely need to get through Death Valley before we can settle. Our biggest travel problem has been we have 2 cars…neither of which should tow a camper. Even a tiny 12′ camper like ours. So we can only go at top speed 50 mph. We are trying to figure out how to trade both the truck (’87 Toyota pick-up) & car (’00 Ford Taurus) in for 1 good truck for towing.  Still scratching our heads. Lemme know if you think of anything!

All the same I’m feeling remarkably blessed and welcome the next chapter.

forgiving humans

Posted by on Mar 15, 2014 in blog | 0 comments

forgiving humans

Been on the Colorado River for 2 weeks now. Didn’t mean to just ran out of money. Its good to be away from Tucson but the sun is still very hot here. We’re not quite outta the desert yet. The water is freezing so I’ve been laying on my back with my head and neck on the shoreline to keep my heat down. It doesn’t work for long. I’ve been getting up extra early because the sun doesn’t become really mean until about 9am. This morning I was sitting down on by the water enjoying the morning nature sounds and smells just a little after 7am a jet ski went by. The ducks went crazy the bugs all ran and I found myself angry for a second at the disruption of the peaceful moment. I was surprised by my anger. Why am I so forgiving of natural disruptions and not of humans. If the wind had pushed hard or the earth even shook I wouldn’t have gotten indignant. How is man any different? I can control him as much.   I let go of the anger and decided to let go of the jet skier who had passed a good 10 minutes ago and realized I lost 10 minutes of peace. silly huh?

moving & art & camping

Posted by on Mar 7, 2014 in blog | 0 comments

moving & art & camping

whew! made it out of Tucson to the colorado river. Its pretty here. Hot still but theres water that has a coolness to it.  Its been an exhausting start  but I can already feel that this is the best decision I’ve made maybe in my life.  The old wondering why I haven’t done this sooner wanders my head.

The move out & garage sale wrecked me pretty bad and Keith too. Donated a majority if the stuff. Almost all the craft & knitting went to a place that distributes to the elderly homes & children doing crafts that have projects to knit for the homeless etc. I think my Mom would be happy her crafts went to help so many.

We’ve been sitting here at the Colorado River site for 6 days now and it feels like 2 at most. The dust hasn’t settled from the move or the drive.  Spending time consolidating and sorting to be in “dry camping” mode. Being in the camper is reminding me of my touring days. Both with the Rock-n-roll bands and the Stomp Tour. Tour busses aren’t much different. Posher with their own driver and bigger bar…satellite TV (when it works) but besides that same simplification of life.

As for health…My next neurology appointment was today in Tucson. (I missed it…which is ok I don’t have the $250 to pay her) My body is telling me things are wrong.  My left leg is acting up like it did back when I was first diagnosed which was painful and barely working. I think staying off it might help. My other symptoms are definitely yelling too. We are having a hard time keeping things cold. the fridge is a dry ice fridge which in this heat still doesn’t last long. To keep my heat down. I’ve been jumping in the icy river with monkey who has never been happier and the MS Cooling vests are helping some.

I sold some paintings! Shipped a couple BIG boxes off to Binghamton to a good home (Thank You Charlie!). When the payment comes in on that…it should lift some of the stress about money and survival.  Im finding it hard to breathe still I think Im still in the Go Go Go mode instead of the it’s ok breathe relax rest that I should be enjoying.

Had another art purchase today which will get us through this week! Thank you Shane! Besides the well needed money the purchases have also helped to ignite a little flame of creativity that might just help with this whole breathing and health thing.

Its hard to see where we will be in the next few weeks. This is just a week at a time…a day at a time and sometimes an hour at a time.  This next trek is going to be a long jaunt through the mean old desert so once we get through that we should be on easier ground. Green and happy. Where the sun not so angry.  In the meantime I am going to earn how to breathe & rest again and draw, paint, doodle and sleep.

 

Remember to Breathe

Posted by on Feb 8, 2014 in blog | 0 comments

Remember to Breathe

We’re at the peak of packing. We have 2 weeks and need to rid ourselves of 3/4 of stuff. Already donated lots.  Since we haven’t found anyplace to move to we bought a cheap trailer to live.  Its cute but a mess indeed.  So it seems yet another adventure awaits. Remember to Breathe.

At the moment I’m going through all my Mothers craft supplies and trying to sort and prepare them to be sold or given to somebody. Mountains of crafts stuff…crochet, knitting, beading, sewing… its overwhelming. I wish there were garage sale fairies that could come and help us do this. I’m functioning on a good day at 70%.  I’m doing my best to take hourly breaks to lay on ice packs and recover but that leaves me at a snails pace.

Praying

Breathe

Breathe

Breathe

 

QUARKS!

Posted by on Feb 1, 2014 in blog | 0 comments

QUARKS!

I am happy to say I have finished  a big series of paintings called Quarks.

Exhausted and sore but extremely satisfied for this wave of art and its therapeutic effects.  Its so clear how important it is for me to create.

Keith and I have given our notice to the landlord that this is our final month living here. In other words we couldn’t pay rent so we must vacate by March 1st.  He’s a nice guy and did love us as tenants so he said he will write us a good letter of recommendation. We have been looking at the islands around Seattle. They are cheaper than the mainland and also are more rural. Lush with greens and water. I want to live on a tugboat. I have since I’ve watched them every day in the Hudson when I lived in NYC. They are strong and small but very sweet and simple.   Maybe one day.

I have lost a lot of sleep the last few nights in a panic about what will we do! But after painting today I feel ore at peace. Painting always puts things in perspective…reminds me everything will be ok and it is just perfect.

In the next few weeks we will have to try to sell 3/4 or more of what we own. I need to be very aware not to let myself stress or overwork because a relapse is the sat thing we need right now (or ever).  I’m sure everything else will fall into place.

Instead of panic I am now excited about our new life.

mysterious life

Posted by on Jan 12, 2014 in blog | 0 comments

mysterious life

Life has a way of always keeping us on its toes. Growing, learning, adapting…

Where I grew up you would see trees that were cut down with a slab of paint over the stump. I learned this was because the tree would grow back stronger and bigger if they didn’t put that paint down. My lesson here was Yes, you may very well get cut down but DONT put a slab of paint over you to obstruct growth. However painful you will grow stronger.

For the last few months Ive been having extreme abdominal pain. Pretty sure its not at all related to the MS. I got my test results back and the doctors are anxious to remove all my inside girl parts. (hysterectomy)  They said I will need to be hospitalized due to the MS & they consider it a major surgery.  They would like to use Robotic surgery. As much as I love robots I still don’t want them cutting me open.  Im not entirely against surgery especially when I believe it is warranted but I do get the impression that they are jumping the gun. This is the first option they give me. The doctor didn’t seem open to discussion or question (beyond handing me a 250 page book on the operation) To be honest Im not convinced they even know what the problem is. They said there are fibroids and cysts and they believe this is whats causing the pain. Im currently looking for other options. Not only because of the hasty decision on one opinionated and hurried doctor but because we have yet to have any insurance to cover a major operation or a second opinion for that matter.  So I am dealing with the pain for now. We are in line for medical coverage. Holding our breath and all.  They prescribed me Codeine, Tramadol, Vicodin, etc etc etc…none of it helps w/ pain…just adds in nausea and dizziness. so nope.

Keiths truck is still not running. We gave our savings (moving monies) to a mechanic to repair it but he’s been on vacation since. (mexico and no #) so the truck is dead in the driveway. Keiths been doing ride alongs to make some money. Riding along with his co-workers to assist. But that has not yielded much.  We’ve been pushing our utility bills further and further to avoid shut off and it looks like this is the last months rent we will be able to pay. So fate seems to be narrowing things down for us.

We will be selling most of what we have to move. Best we can. neither of us are very skilled at garage sales, ebay or craigslist marketing. So I pray we will have some help from above or on land. 🙂  I am continuing to create art. At the moment a few musician CD designs, graphic covers and some painting and illustrating on my own. The CD & graphics are for friends in need that don’t have the funds to pay me. I cannot possibly refuse to help these good people for so many reasons. the bottom line being if I can help I always will.  (and its an honor that these talented artists like my art and want it) …it also helps me take my mind off my pain. (that is if I can get upright to work)

I LOVE my life. Even face down in the worst pain I am filled with the gratitude of all I have been given. I am overwhelmed with the mysteries of life. creativity, endless possibilities and the vast love that exists on the planet. How enchanting life is with its ups, downs, swirls and delights.

I am excited & curious to see where Keith and I will be in a couple months. Wherever it is I know it will be perfect.

 

Opportunity

Posted by on Dec 15, 2013 in blog | 0 comments

Opportunity

We are here in Tucson. It says it’s 77 degrees but its still hot. The desert sun makes it feel 90. Keith’s work truck died.  The new replacement work truck that is…well, without it there is no work.

We are still planning on moving to the North West Coast. We’re poking around looking from Northern CA to the top of Washington.  We haven’t had any luck finding the right place or an employment opportunity.  We’ve decided to look aggressively come March. Since the weather will be more agreeable.

We don’t have enough money to visit anywhere first so we’re trying to do it all via inter web. We saved enough for the move…I know sounds silly when I say it. 1st & last months rent, a truck etc. We just can’t do another summer of 3 digit heat.

We know exactly what we want.

Ideally, a place where we can live simply, a studio large enough for me to create paintings & sculpture and a garden.

We can start by renting a small cottage that has a studio space, garage or barn even.

Another possibility is getting a small plot of land and building our own…Keith is going to look into getting a loan through his honorable discharge with the Army.  He’s finishing his novel and has many other great entrepreneurial ideas that if we found the right place we could do pretty good.

I am getting a small social security disability check now.  In time… between Keith’s ingenuity and my art making we may get on our feet and even more so grow strong.

I really look forward to being strong.

how we got to this point

Posted by on Dec 5, 2013 in blog | 0 comments

how we got to this point

One of the hardest things I have ever done was ask for help. This year taught me compassion & humility.

It occurred to me many people have wondered exactly why or how we ended up in this sticky situation. I want to share with you exactly what happened.

The MS diagnosis hit us pretty unprepared. We had moved to Tucson to be with my Mom, when she was diagnosed with Cancer in Oct. 2011.  We sold most of what we had and borrowed the rest to get us here. Keith and I had both gotten jobs to come into and we found an affordable place near the hospital my Mom was in.  Surprisingly she died 2 months later in December.

My job which I was told was full time with medical benefits ended up being a part time w/ no benefits and $9 an hour.  This was not going to cut it so I found a better job. Painting airplanes at an aerospace engineering company. It started as a temp job at $11 an hour. After working there one month they told me they wanted me full time permanent which would bring in a higher salary and full benefits. They even asked me if we would be interested in relocating to Ireland in the future as they needed painters there.

So yeah it seemed everything was beginning to fall into place….then I started dropping things. Staggering when I walked, my legs giving out and falling down. I looked like Id been drinking. Im sure people I worked with thought I was nipping some scotch in the decontamination room.  Then my right hand stopped working.  The people I worked with said must be tendonitis. Then my left hand stopped working.  Meanwhile, while these things were building and limiting my functions I was trying to find a clinic to get into to get an MRI to see what the heck was happening to me. Once hired as a permanent employee of B/E Aerospace it would still be a few months before the insurance kicked in.  I didn’t make it.

For the hundredth time I called the clinic doctors and forced my way into a MRI which (Im still paying for out of pocket.) After another bunch of calls to get the results I was told he thought I had MS.  It was only when I made an appointment and sat before the clinic doctor that he saw how bad I was and said I needed to go to the ER. I refused…on my own I had been trying to get an appointment with a neurologist in town. This was impossible. I was told they were booked six months out. Yet, while sitting in the clinic we waited while he called a handful of neurologists before finding one that could see me the following day.  She put me in the hospital immediately where they treated me. I lost my job and Keith and I didn’t know what would happen.

What happened amazed us both. Our friends from all over the world pulled together and supported us in ways we never knew possible. Financially and with Love, even a Juicer. Friends I haven’t heard from in years and close friends pulled together and started fundraising sites and having exhibits to raise monies.  SO Much LOVE!

We have so much to be grateful for! I don’t know how we could have gotten through this last years hardships without the generosity and love of our friends and family. All our Love to you today and everyday.

Our Love and Gratitude always!

Cris and Keith

soon

Posted by on Nov 3, 2013 in blog | 0 comments

soon

I’m beginning to see that I can beat this MS thing but I do need help. I need guidance with what my body needs. Dietarily and exercise and I feel like I cant do it on my own.  I pray I can find the way.

evolve

Posted by on Oct 27, 2013 in blog | 0 comments

evolve

One of the hardest challenges I’ve had in the last year is accepting my limitations. I never knew I had them before.

My head is where it hurts the most. For example today I wanted to do yoga but there was too much dog hair on the floor (shedding season so cant keep up with monkey) I sweep up the dog hair and that leaves me too pooped to do anything but recover for pretty much the rest of the day. I feel an urge to paint…an overwhelming need to throw some paint on a canvas and go go go. I get the canvas ready turn on a fan open the tubes and Im exhausted.  I want to leave the house to go to ….well do anything. I get dressed I get to the door…Im exhausted.  Some great days I can get as far as beginning something…getting into it and then crapping out.  THAT WALL. Its unrelenting.

Anyone that knows me well knows I finish what I start. I follow through with promises. I set my sight on something and don’t stop until I complete it.    It hurts to say this but thats not me anymore.  I have to swallow that pride or maybe spit it out completely but my stubbornness just isn’t enough anymore.

Its very frustrating and maybe the hardest lesson I have to learn. letting go.  it seems like everything I used to be is not who Im able to be now.

Life is filled with wonder and miracles. So many cliches about bending, change, adapting blah de blah de blah…Im up to bat.  I hope I can make it around the bases.

listen to advice but follow your heart

Posted by on Sep 29, 2013 in blog | 0 comments

listen to advice but follow your heart

It has been some eye-opening, even more importantly, heart opening journey since I got the MS diagnosis last year. ups and downs but always moving forward in one way or another.

Theres a barrage of information out there sometime too much. I’ve found myself ingesting as much information as I possibly could to educate and empower myself only to find myself immensely overwhelmed and having to wonder if nobody really knows anything and theres nothing but opinions, millions of uneducated or sometimes worse half educated opinions represented as facts. Im sure theres much legitimate information that can, have and will continue to help many.

My neurologist says she only listens to data.

I also know how biased data can be extracted and represented so theres that.

The one thing I know for sure, whether it be MS or simply diet, everybody is different and needs to listen to their bodies, find that communication.  I always find myself coming back to my heart.

Its always true.

 

 

drug lobster

Posted by on Sep 28, 2013 in blog | 0 comments

drug lobster

Doc says Im having an ms “relapse”.
(fumbly hands) lost most use of hands again drop things when try to carry them. Keith calls this the “dropsies”…stiff legs, left leg burning and extremely weak, can’t walk on it…electrocuting feeling down my neck and spine, lots of pain… too many things to list.

the neurologist wants me to go to the ER so they’ll admit me into the hospital and pump me with steroids. I really dont want to do that. I think that was mostly what I was detoxing (and thousands $$$ of hospital bills w/ no insurance = stress)….  yet it did get the use of my hands back and walking again.  I’m going to try to ride it out…the hospitals not going anywhere.

On the ms sites people are saying they’re also having relapses they think it’s because of the weather changes.  maybe it’s temporary?

In any case I started tecfidera (the new ms “wonder drug”). Tecfidera has a side effect of “flushing” I thought I understood this was a slight reddish glow in the cheeks. My whole body turned into a lobster. (see photo) An itchy, bright red, burning lobster. Im taking an aspirin an hour before and a probiotic with it. (benedryl when needed) I’m happy to say I’m white again. On week 3 its common to have a belly ache and then people say they have energy again, feel much better, don’t have relapses etc.

We’ll see how my body likes it.

I was able to get the Tecfidera for free from Biogen because, well, yeah   -$

I am going to get myself a good doctor. One that can monitor me get me on a good plan maybe some Physical Therapy. I found a good Functional Medicine doctor and thats what I would prefer over any other GP.  Next week announces the Obama Care healthcare options Im praying that’ll get me closer to a functional medicine doc and some good treatment.

one foot in front of another… got so much to be thankful for, a little setback don’t mean nuthin’.

I’m sorry

Posted by on Sep 15, 2013 in blog | 0 comments

I absolutely hate hate hate writing or thinking negative. I certainly dont want to bring anyone I know and love down. I dont want to make my dear family and  friends worry. I want to say I am doing so much better.

I can’t say this.

Everything is motivated by pain the last few weeks.

Unbearable excrutiating unrelenting…

I spend most the days and nights praying for relief. I try to sleep to sleep through the pain, I try to exercise or move to work out the pain, I watch television or do puzzles to try to take my mind off the pain. I meditate to release pain.  I reluctantly eat so I can reluctantly take a prescription drug to inhibit the pain receptors in my brain…hating to quiet the yells for help by my brain…obviously telling me something is wrong and I am clueless how to help and what to do.

Is it the MS? Im unsure these days if there is even MS. Maybe its Lymes disease? Maybe its something else entirely.

I went to the doctor last week, he is the state appointed poor mans doctor who besides not speaking english does not seem to be anything more than a triage nurse.  In his broken english he gives me drugs and tells me to go to the ER or accept the pain as normal aging process.

I am doubled over unable to do anything but writhe and wimper. This isn’t normal aging pain. Nobody would get to the age of 45 if this were the norm.  I applied for state assistance so I can go to a functional medicine doctor or find a good doctor, get physical therapy?…Ive spend hundreds of hours on the phone on hold and getting passed around like a hot potato. They say it’ll be through any day, they’ve said this since June 6th.

I do not think the ER will know what to do with me. Most likely give me more drugs.

I am unsure what to do.

 

 

3 steps forward two steps back

Posted by on Aug 16, 2013 in blog | 0 comments

3 steps forward two steps back

3 steps forward two steps back….that still means I’m moving forward though!

I’m watching what I eat….well drink (juicing).  I’m doing daily meditations, stretching, exercising.  I’m being diligent to be impeccable with my words (Inside and out!).  I’m painting or drawing…almost every day.  I do cognitive exercises (puzzles and games).

Keith and I are anxious to leave Tucson but have yet to find a destination.

We are looking at Oregon or Washington for the climate the healthy environment and the cost of living.

Keith is currently looking for work in any location and that will probably determine where we go.

As for the step back? Well I had really hoped Social Security would provide some heath care or discount but it will be another two years before I will get medicare.  Im not sure why.  seems silly.

I am doing my best to do physical therapy but frankly I dont know very much.  I AM learning though!

My hopes is I can fix this thing myself …(obviously)  But some doctorly advise sure would be helpful.  We are looking into healthcare options but deductibles are so high and prices etc its just simply unaffordable.

I have hope.

I just read an article about a woman that has been treating her MS with injections for 2 years and just discovered it was Lymes Disease. Even though tests for Lymes were negative she did the treatment regardless (by insisting on it) and in FOUR days her symptoms were gone! I can’t imagine how elated she must be.

I have hope.

Juicing

Posted by on Aug 6, 2013 in blog | 0 comments

Juicing

So I finished the raw cleanse and began the juice week. Ive decided to extend the juice week for up to 6 weeks. beyond that your supposed to have doctors monitoring you. I would love to sayI feel so much better but alas no. I think it will take time. Its so much work to clean and prepare the foods. Im having 6 juices a day so its a workout.  I think this week I will begin incorporating solid foods into the diet. too raw, no gluten or dairy etc.

 

cleanse

Posted by on Jul 21, 2013 in blog | 0 comments

cleanse

I’ve begun a raw food cleanse. two weeks of raw foods only and the third week of juice only.  Shown in the picture is on the left: miso, avocado, carrot, beets, sprouts  and on the right:  apple blueberry spinach w/ medjool dates.

I cant say I feel any different. Maybe next week.  It is weird not cooking and it sure is a lot more work to wash and prepare.  I’m sure things must be happier in my insides.  I hope so.

 

 

phew

Posted by on Jul 7, 2013 in blog | 0 comments

phew

I feel like Im on the cusp of a new beginning.  Thank God this chapter is nearing it’s end.

I heard from Social Security Disability that I have been “awarded” benefits. Its weird, the term awarded used in this sense. Like I won an Olympic event.

I hope I can now get physical therapy and some of the help I’ve needed for this past year.  Then get to a point where I wont need social security etc.  Keith and I still plan to move North. We’re looking at the weather and conditions of Oregon and Washington.  Keith is certain he can get a job similar to the one here anywhere up North.  He hates it so I hope once we find a nice home he can find something that makes him happy.

I’m still waiting for all the paperwork and red tape to process. It may be a month or two before we can physically make any changes. still a day at a time.

But I do see that glimmer of light!

phew.

Functional Doctor

Posted by on Jun 17, 2013 in blog | 0 comments

Functional Doctor

The Tucson temperature is beating myself and Keith pretty hard.  Over 100 degrees every day. Its been 112 & up this week alone. Keith working on rooftops and were barely keeping utilities from being shut off. Heroic at the least.

My body is not responding well. New pains and weirdness.  Im unsure whats happening to my body. My neurologist is begging me to begin a new drug. a pill form of MS treatment call Tecfidera. My Gallbladder and Liver are in dire condition from the Rebif injections and infusions and various other Pharma’s…I’m doing a Gallbladder/Liver cleanse of Apple Juice (yum) and Olive Oil (yuck).

I’ve been unable to do my Tai Chi, yoga, Body rolling etc.and all the good things that help make me feel that much better… because I’ve been pretty much doubled over in pain the last 2 weeks.  I’m hoping the Liver and Gallbladder cleanse will help but it may take a while and several times over to do it.  The creator of the cleanse, Moritz said in one interview how were told the body is attacking itself with cancer and MS etc but he believes that the body is actually buying us time to repair the damage thats being done to it. The body does not try to kill itself. I love that.  Toxins and what not that we eat or administer to our bodies on the other hand get filtered through the liver and gallbladder and that takes a lickin’. It really does make sense when you think about it.

Today they announced a new study that they believe is a huge breakthrough for MS treatment. Again this treatment is an exact opposite approach to the drug my neurologist wants me to start.  It’s so hard to know what the right thing to do is.  Greed with the Pharmas make it difficult to discern what is the best treatment. Do they really know what they’re doing? Doubtful. My faith in medicine has never been good.  Yet I’m finding it harder and harder to know where to draw the line of trust.

If I broke my leg I would know to go to the hospital and trust they know how to repair it.  Where do you draw that line of trust?  My friend, a nurse, said his motto is theres a question of whether or not you should go to the emergency room…then you should go. I’ve always felt if you have to question it then you shouldn’t go. I’m really not sure which is right. For me it used to be a matter of money, insurance and well is it necessary. Now that I have NO Doubt I need help. I mean, I know I need help. I’m really not entirely sure I trust just anybody to shoot me full of whatever they think might help that week at whatever cost to the rest of my system.

Dr. Terry Wahl was in a wheelchair for years with MS. By eating right and exercising she healed herself completely. I have been using her as a role model. She wrote me and told me I need to get myself a good “Functional Medicine” Doctor. I never heard of this before. In looking into it I’ve found it is exactly what Im looking for. A medical doctor that believes in the importance of nutrition and treats the entire person not just symptoms and disease.  I’ve begun searching for one but again, without any form of medical insurance I simply cannot afford to see anyone.  I hope that soon won’t be an issue anymore.  Luckily I have my sister Laura feeding me her knowledge and wisdom and helping me day to day until I can get a handle on this.

As for this stinking desert heat. Keith and I are looking seriously at Oregon. Cross your fingers and say a prayer for us!

We still have faith.

 

 

 

 

Zombie Lollipop

Posted by on May 5, 2013 in blog | 0 comments

Zombie Lollipop

“The running water will not stink,  the engines that are constantly used will not rust”

I’m beginning my Tai Chi program today. I will do the Tao Chi practice 1-2x a day.  This should bring all my work together. The diet , the meditation, the exercise.

Every morning I have been drinking a juice. Today, I had Kale, spinach, green apple, carrots and cilantro. It was really yummy! Every afternoon I have a smoothie. For example, Dandelion Greens, Beets, blueberries, Kale, flax seed.  Every evening I have a small solid meal. (I think of this as reward for my good behavior) This might be chicken or a veggie burger, broccoli, beans, coleslaw…

I havent noticed that I feel any better. I haven’t noticed that I look any better.  I still have the pain, fatigue, same symptoms as I had a year ago.  If I stray off the diet in any way I feel like I’ve been hit by a mack truck. For example, last week there was a small zombie lollipop. I ate this tiny lollipop and wow. It made my whole body feel like it was going to explode. Like the seconds before you spontaneously combust.  I cant describe the horrible pain and evil that tiny lollipop brought on.

So I don’t feel any better on my strict diet and exercise plan, but I feel so incredibly worse if I don’t do it. What does this mean?

I did notice one very important thing. I’ve been mindful of my words. Thoughts and spoken. I noticed that if I think positive I am less likely to get in my own way. Usually thats who gets in my way the most…me.

For me staying positive is essential.

I made some new oil paintings last week. they are very small and abstract. 8 inches by 10 inches. But I like them. They are expressive and reflective. I call the series True reflections. One of them has been chosen by my friend to use as his new Jazz Album cover. This is a great honor as he is a superior musician.

I continue on this journey wide eyes and working on remaining calm.

Whether I remind myself or not …It’s all good.

 

 

 

The magnificent human body

Posted by on Apr 21, 2013 in blog | 0 comments

The magnificent human body

I have learned so much in the last year it is just remarkable. I have such gratitude for the experience and grace that has come from it.

Each day I grow stronger and wiser. I am so impressed with the magnificence of the human body.

Today I learned a little about cells.

I read an article by a biochemist who studies cellular disease  and discovered how important “letting go” is to the physical state of the cell.  When describing the seemingly indestructible cancer cells as cells that refuse to grow or move…by the person “letting go” they literally let go over their hold onto whatever that may be and go into a natural state. Dying off sometimes being the natural state for a cell etc.  She talked about how cells put under a microscope reacted completely different according to their environment.  A cell put in a rigid environment and one in a “comfy” one behaved as people would. The rigid one stayed frozen and the relaxed cell went back to a normal state of being.

The article really reflecting the importance of relaxing and listening to your body on every level.

What struck me about her article is that she mentions how we must be careful when treating people with illness…that it is easy to feel guilty about not healing when someone says “well just let go.”  This is something I have been wrestling with.

It’s an interesting twist to healing that I’ve never heard mentioned before but I have been experiencing. (maybe it’s not as common as I think.) With me, guilt seemed to creep in as a result of not healing quickly or maybe even just being at dis-ease to begin with. Especially since I have had so much support!

This is a tricky area because while you’re healing you hear from so many that all you need is to forgive, let go, have faith, eat well and exercise. I have been working on these things for over a year now. What I’ve discovered is my patience is wearing thin.

Then I remember hearing somewhere “Healing begins with Patience”.

When I think back at how far I’ve come and realize exactly all I’ve accomplished I’m pretty darned amazed with myself.  Who Knew?  I think today I will just pat myself on the back and say “Yep! I’m doing good.”

love to live

Posted by on Apr 18, 2013 in blog | 0 comments

love to live

Words have often eluded me…this is why I paint….a blog, not so easy for me as smearing blue across a canvas.

I am in wonder today at the magic of life. Many things, that is, human experiences can be found in the expression of art. movies, books, music, dance…we can find comfort in these things. A moment of warmth.

The most important things you just cannot find in books, movies, art… cliche’s of all kinds rain from the sky just thinking about it.

we always try to express this. It’s lovely. But the closest we can come is only a whisper.

Joseph Campbell said there’s three things we talk about: The least important, every day stuff, ‘hows the weather’ etc. The 2nd most important, Things we try to express and cant quite find the words or words aren’t enough or they are misunderstood… then the most important thing: Thats just the thing you cant even begin to put into words.

living. life. the wonder of it.

to love to live . to live to love.

we have to try to express it don’t we?

Knowing Fear

Posted by on Apr 11, 2013 in blog | 4 comments

Knowing Fear

It’s a day at a time. That may never change. But, Im ok with that. What else is there?  dreams, hopes, fears, worries, nothing really….

Did you ever get the feeling that sometimes life beats you on the head until you can do nothing but surrender?

Fear is a funny one. I had an experience many years ago where my red eye flight from buffalo to san antonio was almost hit by a russian satellite reentering the atmosphere. (no, really.)  The pilot thought it was a meteor. The handful of people on the flight (including me) thought we were dead.  Ironically, I was reading a chapter in a book about dying when the pilot first mentioned something “of interest” outside the window. The book was saying how death is such a natural part of life and certainly nothing to be afraid of and I was thinking “well, that’s just silly”.  When I looked out that window and saw that giant ball of white fire and the trail of blue flame….I thought it was the most magnificent thing I’d ever seen.  I had such an overwhelming sense of peace come over me. I remember thinking “If only I could communicate to my family how okay I am with this.  I am not afraid. Everything really is ok.”

That happened almost twenty years ago.  I didn’t die.

I often try to revisit the memory to reassure myself that everything really is ok.

A few times since then I had faced death in other situations. In each circumstance having the realization that again I am not afraid to die.  So here I am realizing I am not afraid to die.  This realization made me conclude that I have no fear.

nope.

not so.

There was a point about 9 months ago where I couldn’t breathe. My chest was being squeezed (like a boa constrictor had me in its grasp) I had no idea what was happening to me. (called the “MS Hug”) My hands weren’t working, my legs super wobbly.  Extreme pain over my entire body. Weird electrocution feelings running through my skin and muscles…Now  I was losing my breath.  I was scared.  That was fear…that thing I was sure I didn’t have.

My faith has been so strong my entire life.  Not even just faith…. a Knowing.  I see my blessings and can’t conclude anything else.  In my head and in my heart I know.

I realize of course this is where it gets tricky to share.

Every single individual has their very own unique experience and expression of  this.

Is there a dichotomy of fear? maybe on one hand you can know everything is ok…but on the other hand when that lion is just about to bite your bum you worry.  Don’t really understand it myself.  I guess that makes sense…Instinct etc.

I once read somewhere about a person who wasn’t afraid of dying but was afraid of living.

That I understood.

 

Gratitude

Posted by on Apr 7, 2013 in blog | 4 comments

Gratitude

While back east in “boot camp” I intended to write every day or other day but oops. nope.

Seems every minute of my days these last few weeks have been filled with discovering, healing, practicing, and grasping.

Any moments found in-between were used for processing.

Now that I am home, I have a great clarity of the months lessons… as well as a greater understanding of everything I need to do and why.

So incredible to go home.  The best way to describe the transformation I feel is to say that everything has just clicked.

Physically and emotionally the treatments my sister did at her Naturopathy clinic “The Healthy Living Center”  have given me a huge jumpstart/leap forward.  But maybe just as important was bearing witness to her in every day life.  They say you learn best by others examples. Laura is a remarkable role model.  Her vast knowledge of the human body, nutrition and medicine…well, thats just the beginning.  Her ability to find humor in everything, that’s a gift.  Her speed still astounds me. Like a hummingbird she glides so easily from one endeavor to another.

What a gift to spend every day so close with her.

Now that I’m home I see her influence in even the smallest of ways… thoroughly washing my vegetables, creating meals or juices.

Keith immediately noticed a difference when he saw me. He said I looked much healthier, younger more beautiful etc.

I have a plan now and it won’t take long for everything to fall into place.

Thank You a thousand times to my sister, Laura and her husband, Doug for their  joy, knowledge, love and generosity. Inviting me in their home and sharing their lives with me.

My sister Debbie who spent the day teaching me how to be a “princess”.

My brother, CJ and his wife, Kathy for opening their hearts and lives and sharing their excitement of their endeavors and wisdom.

The short, but cherished time I got to spend with my brother Ricky and Debbie’s husband, Ron.  The luck I had to reunite with my niece Amanda and see what an amazing woman she has turned into.

The joy to spend some quality time with nieces, nephews….not to mention all the people I met and got to know in such a short period of time.  I have such love, gratitude and admiration for their sharing their lives with me.

I am such a lucky girl.

Falling Down

Posted by on Mar 15, 2013 in blog | 3 comments

Falling Down

Humility is something I have been learning this year in leaps and bounds. no pun intended (as most of these lessons occurred when I was on the floor after falling down)

The first few months of my MS caused me to lose complete use of my hands and made my legs wobbly. “Foot drop” where my left foot doesn’t lift when I walk and I fall. (I was falling 3 times a day even walking slow. My whole body off balance and made even grooming myself nearly impossible.  So yep I swallowed that pride and a few times spit it back up. That was 1 year ago.

It’s been two weeks at my sisters Naturopath clinic getting intense detox from all the Heavy Metals and Prescription Medicines. (3 weeks off all meds) LOTS of stuff coming up. Physically, we can see the sludge in the Ion foot baths. But even the symptoms that since faded are surfacing. Numbness, burning, hands are closing fingers and being uncooperative, “foot drop”, imbalance etc.

These things are coming to the surface to be released.

That doesn’t just go for the physical. Mental and Emotional challenges as well.

I have not been back to this area (where I grew up) since 1996! I had no idea it had been so long.It seemed to just be a couple years. Life seems to happen and time speeds up while your not paying attention.

This is interesting … (2 + 2)

My first symptoms of MS began when my father died in 1996. My left side went numb. I was at Epitaph/Hellcat Records and ended up with mountains of medical bills and doctors telling me I would die any day of a stroke. If I had faith in doctors I would’ve probably died as they instructed that week.  Instead my rebellious self went to Paris and ended up joining the Stomp Tour.  Which brings us up to 2012, my Mom dies. 2 months later My “foot drops” my hands stop working and Tests show a diagnosis for MS. They tell me I also have the evidence of MS from 1996 on my brain but it is now “inactive” on my brain just “active” lesions on my C-Spine.  Hence the moving forward get on heavy doses of drugs etc. (=4)

…Now I’m back home. I’m in the “Belly of the Whale”, as it were.  I’m facing the demons of childhood, death of my parents….all of it.  Facing those monsters head on and saying “Ok Now thats enough.” Im ready to live and be healthy and strong.

This is some good stuff!

Keith and I are still facing financial struggles (gas shut off etc) But I KNOW this is temporary and soon we will look back at this wiser and stronger than we ever could’ve dreamed.

I sat down and wrote this because I fell down again a few minutes ago. It reminded me how far I have come in a year and how strong I will be soon.

 

 

BOOT CAMP

Posted by on Mar 9, 2013 in blog | 5 comments

BOOT CAMP

Firstly I’d like to say, I really didn’t think anybody read this.I’ve had a bunch of people say they not only read it, they like it. So I ask this of you. If you’re reading this, let me know. (comment.) just a “eh hem” or cough…so I know Im not alone in the room. 🙂

 

BOOT CAMP:

I’m in DE-TOX. super intense deep detox. Its the 10th day of 30 days at my sister Laura’s. She’s an Iridologist/Naturopath. Brilliant she is. Her and her husband have graciously welcomed me in their home. Looks like I might not need chelation therapy. Because we’re already having success.

I know I’m where I need to be.

This week I feel horrible. I think now I’m at the worst spot of it…the darkest before the dawn…I know and can feel good things are happening but my body is beat. I feel horrible inside and out Im sure its cause everything is coming to the surface before it gets better.

I did JUST stop a massive regimen of pharmaceuticals and prodding and poking.  so the shock of that alone….

The last few days have been green juicing with a solid raw food meal for dinner.

This is  raw shredded sweet potatoes w/ honey and walnut oil with broccoli stems, kale, cilantro and garlic both chopped up in a cuisinart.  Im getting good recipes, learning how to eat and prepare food. yum.

 

 

Also, taking lots of Nature Sunshine supplements (i.e.. heavy metal detox, stress relief, magnesium etc)

Doing a bevy of treatments including:

Rife Machine:

good description of Rife Machine – http://www.frequencyrising.com/rife-machine.html

actual footage of bacteria dying during rife – http://www.youtube.com/watch?v=QCQ2SutlREU

Ionized Foot Baths:

When water is ionized and split into H+ and OH- ions (and sometimes into H3O+ and H2O2 ions), these ions are able to enter the body through the 4,000 large pores of the feet. A detox foot spa offers a way to utilize this opportunity to revitalize and cleanse yourself with all-natural mechanisms.

At this stage, the circulatory and lymphatic systems transport the ions throughout the body. The ions from the foot bath detox neutralize oppositely charged toxins in the cells that are normally slow to exit the body

As well as:

Infra Red Sauna, Chi Machine, Inversion Table, Chiropractic Adjustment, Lymphatic Brushing etc

…and going to the gym Monday, Wednesday and Friday. phew

so yep.

not fun but good. I am so blessed.

Luckily my sister has a great sense of humor so we laugh almost constantly. the best medicine 😉

 

Chelation time

Posted by on Feb 4, 2013 in blog | 0 comments

images

IV Chelation is the best way to get heavy metals out of the body.

I found a man in Cheektowaga, NY (near where I’ll be staying for a month of healing). They charge $150 per visit and you need between 10-30 visits to make a difference. Even one visit is out of my monetary possibility at the moment.

I sent him all the artwork images I have for sale on this website. He agreed to look through them to see if theres anything he likes for a trade.  My fingers and toes are crossed. This will be a great leap in the right direction.

They seem very caring so I hope Dr. Barnes likes some of my work.

Here is the link to his facility.

http://www.preventivemedicine-wellness.com/index.html

 

 

Phew!

Posted by on Feb 3, 2013 in blog | 0 comments

my paleo diet

I’ve dropped out of the clinical trial. They just dont seem to have my best interests in mind. They were nice for me just being DATA but they just threw too many drugs at me and most of them I just could not afford. The injections and infusions are over and done. I do need to go mid February for one last exit visit. from 8am-6pm. Testing cognition, blood, mri’s, walking, balance, you name it…I think I gave the Western Medicines a fair try.
as for the meds….weened off the ones needing weening.
I had my 9 hour infusion and the next day read an article that the drug they’re testing was discontinued in several other trials (Alzheimers etc) because patients were dying ( so far none died for ms but its a new study sooooooo…yeah) the combination made me go “huh.” and my body said yeah this sucks get off all this crap and see whats what.
My other neurologist the one I saw wayyy back that put me in the hospital suggested a $3 drug for the burning in my hands, (it worked) but I wasn’t sure if it was causing the heart rate issue. weened off it and the heart rate was still high and the burning came back. So I left her a message yesterday asking if I can get back on that one. I also gained weight (even eating nothing but greens) from that stupid drug they wouldn’t let me off of and the first thing my neurologist asked was did you gain 30 pounds from gabapentin, everyone does….She’s mindful so I trust her. She’s concerned about me getting off the injections but I think the pharmaceutical company is using scare tactics making people believe they will die without it. I’m giving it a try and see of diet and exercise can make it without the rebif. If I start to get worse I promised myself Id go back to it.
Also Im not opposed to going back on the $3 that stopped the burning. Ya know within reason….
Meanwhile for my birthday (not until april but…) Keith, my husband, got me an LA fitness membership cause they were having a special. sweet of him because he’s ANTI gym (he thinks its a rip off cause people can do all the stuff on their own with out a gym) In LA fitness’s case I can walk on the treadmill holding the railing while it monitors my heart rate. ride a bike without my balance. all the machines will hold me steady while I work on each part of me. Get strong and lose the weight the drugs gave me. Im strictly eating fruits and green leafy veggies and lots of green smoothie and taking vitamins besides.
My sister Laura has a naturopath clinic. My brother CJ has miles, so they got me a flight to get me to NY to stay at my sisters house while she detoxes me. She wants chelation but we need to see if that possible. she has lots of gadgets etc that I promised I’d stay 30 days and try.  Laura’s strict and smart so I know I’m in good hands. Plus she is funny. I’m always laughing when I’m with her.
Im gonna miss Keith and the dogs something awful.

 

Phooey

Posted by on Jan 22, 2013 in blog | 0 comments

enoughThe last few weeks I had some heavy medical treatment– infusions this last 2 weeks and its wrecked me. I’ve decided phooey with the doctors and their ridiculous expensive medicines that do nothing but cause trouble. So I’m dropping out of the clinical trial and going hard core health. Foods, Body, Meditation, etc. (some meds if they’re ok to a degree…maybe. but PHOOEY to “doctors” and their bad habits. I’m weening off all the meds they had me on. Ridiculously bad behavior these doctors have. Something doesn’t work so theyincrease the dosage to the maximum and give you several other medications to treat the side effects of the medications and so on and so on….and don’t give a hoot if the original drug has done what it was meant to. It seems they get paid by the medicine dosage and varieties. They made a mess of me these last few months and now I say .Enough. I’ve given them a year. I think that was fair. There are still discoveries and possibilities through surgery etc but for now Im starting clean. Ween off all medications and stick to green smoothies and the Paleo diet. I found a gym for $19 a month I can go any time so Ive developed a schedule of 1 hour 5 days a week. SLOW and steady but paying attention to my body. walking machines have bars to hold onto unlike walking around my block. They have a pool etc. So gentle movement and good foods. I’ll give that a try and see how it goes

Keith, bought me juggling balls for Christmas to get the brain and dexterity a going.   Im up to 1 ball…….3 is the goal 🙂

Prescription blues

Posted by on Jan 13, 2013 in blog | 0 comments

Feeling down and out.  Thinking too much I suppose.

Feeling a bit like a guinea pig.

images

The neurologists finally let me off almost all the meds that weren’t working and causing horrible side effects. I still don’t know exactly what they gain by insisting on these things.

It’s puzzling. The neurologists put me on one new drug to see if it would relieve the burning in my hands. It seems to have begun to work but its side effect is my heart rate has been between 140 – 165. Thats really not good. So they want to give me something to slow the heart rate…whatever side effects that has I’m sure they will want to prescribe something else to counteract that…and so on and so on….the logic doesn’t make sense to me. They continually prescribe things to help deplete the side effects of the last thing they prescribed. Did they sign a contract in medical school agreeing to a certain % of each pharmaceutical and now they’re trying to make their quotas? why? I cant seem to understand their strong motivation.  Seems like if the treatment is worse than the problem then you should discontinue the treatment. Maybe that why I have $3 in the bank, my simplistic thinking method…  Mysterious.

 

Possibility?

Posted by on Dec 27, 2012 in blog | 0 comments

timthumb.phpCCSVI or the Gamboni (guy that discovered it) Procedure is giving me hope!

There’s some controversy now because lots of doctors who aren’t good are doing it and screwing it up.
Back when I was at the record company in LA (’95-’96) I had my first symptoms of MS. I had blue cross 100% great insurance and had 10+ MRI’s tons of tests, saw every kind of doctor and they all agreed on 1 thing . Not enough blood was getting to my brain. The surgery opens up the veins so enough blood will get to the brain. (thats why I think it’ll work) Incidentally. blue cross denied the coverage and didnt admit they should have paid it until AFTER the statute of limitations were up. (bastards) so I went bankrupt with $25K medical bills) They never did find it was MS until last May.

Stupid insurance companies. I later found they do that a lot with “brain” claims because the brain treatments cost so much.

I qualify for then Obama Care pre-existing condition but Its $300 a month and I’ve heard it doesn’t cover what I need it to. (meds and stuff) but as soon as I get disability benefits I might be able to afford that at least. (the disability wont be approved for 1-2 years becausethey are so behind with cases to approve.

So yeah, Our system is broken. Its frustrating.

I found this website that says they wont charge more than $10K for the surgery.

http://synergyhealthconcepts.com/a/?gclid=CMeiipeZu7QCFUjZQgod8gcA4A

 

 

A Global Friendship

Posted by on Dec 22, 2012 in blog | 0 comments

ourartisans teamagf

http://www.aglobalfriendship.org/agf/

A Global Friendship donated their hand crafted bracelets to CrisCare to help raise money for my MS treatment. Back when I was well I helped the non profit organization to raise money and sell these bracelets to bring clean water to impoverished nations. Now, A Global Friendship has spread their generosity to assist many in need.

The bracelets are for sale on my ETSY site at:

http://www.etsy.com/shop/QualianaArt?ref=si_shop

moving forward

Posted by on Dec 16, 2012 in blog | 1 comment

196226_1011498640704_1645_nI have given my social security benefits claim to a group called Allsups. Recommended by The MS Society.  I just couldnt handle the mountains of paperwork and red tape. After my Allsups interview I have a better grasp of whats happening. They said the baby boom generation is coming to age and causing the Social Security benefits to fall way behind because they are so understaffed.  Claims that would be processed quick are taking 2 years.

They said I qualify in every way I am just not a priority because I am young. Because I will not be dropping dead anytime soon there is no rush…maybe if they wait long enough either I will get better or they will find a cure for MS. In any case I need a plan B, C and D.

If…IF, when or if I get my full strength back in my hands there is still no possible way for me to go to work anytime in the near future.  Fatigue, pain, imbalance, there are so many things happening. It takes me a full day to do simple tasks.

In my favor I can continue to make art.  even crippled I can abstract or expression or impression…

I will.

 

Robot Mitten hands

Posted by on Oct 18, 2012 in blog | 0 comments

Robot Mitten hands
I’ve been wearing Keiths robot pajama bottoms and comparing my hands to robots.  It makes me feel not so bad about it. Robots=Good

Critters

Posted by on Sep 28, 2012 in blog | 0 comments

Critters

Finished my Critter series. Seven critters in oil on board and they make me smile.

I had improved physically quite a bit. For the last few weeks it seemed my hands were regaining their capabilities. I could cut and eat food even! But the last two days they have just lost much.

I don’t know if thats 1 step forward three steps back or three steps forward one step back.

I must confess my friends were in town and I stopped my healthy routine, threw caution to the wind, as it were.  Perhaps my routine was holding me together a lot more than I was giving it credit.

Working on the Art most of all helps me. Its not only a physical exercise , its mental, spiritual and emotional. Even the Critters.

Although the effort was far more than it used to be but I need to stop comparing what I used to be able to do and focus on what I can do today.

Lesions

Posted by on Sep 26, 2012 in blog | 0 comments

I just got off the phone with the Neurologist.  She told me in detail where and whats happening in my brain and spine.  The first person to tell me on these 7 months and I had to ask 7 times.  Why is it so hard to get information about yourself from a doctor?

So., I have many lesions on my brain (a mess of them as it were…

lesion is any abnormality in the tissue of an organism (in layman’s terms, “damage”), usually caused by disease or trauma. Lesion is derived from the Latin word laesio which means injury.

On my brain I have what’s called Dawsons Fingers, because it looks like someone put their finger tip prints on your brain.  She said the more disconcerting lesions are on my cervical spine.  There is a lesion on my C3.4 and what they call a Hyper Intense (meaning Huge) lesion from my C2.3 to C6.7 and those are very active.

So, theres that.

Somehow it feels more real now.

 

 

Art and the belittlement of Social Security

Posted by on Sep 18, 2012 in blog | 0 comments

So much seems to be happening and yet nothing at at all.  I finished my first series of paintings since the MS struck its mighty blow at my hands and head.  Surprisingly to me they are very serene and quiet. I thought I had much rage and confusion that the emotions would pour out into a violent slab of outrage on canvas. I saw deep splashes and depths. That gives you a little insight into the artistic process, at least for me. I could imagine a whole bunch of wonderful things I’m going to create and then once I approach that blank canvas what comes out is of its own accord.  A lot like life. Make all the plans in the world but you never know where you’ll end up.I’m happy that I seem to be at peace in some way. Maybe the exercise, diet and meditation, all the work I’ve been doing is paying off? Or maybe its the drugs. 🙂

Todays meal was a bite of Kale (2 stems), Ginger green tea (fresh ground ginger), 2 scoops of Diatomaceous Earth, 2 scoops Flax seed, 1/2 cup of cherries, A big hands full of Dandelion Roots (weird eating them after growing up playing in ’em), goji berries, sunflower, pumpkin and sesame seeds.  I am surprised I don’t feel and look better. I guess I would feel much worse f I weren’t working so hard. I hope so anyway. Hate to waste all this good behavior.

I filed for Social Security Disability in early February.  I heard from them for the first time today. They scheduled me to see 3 different doctors to inspect my condition. They said they’d mail me the dates.  According to everyone I spoke to 98% of people get denied benefits the first time they apply. Thats why theres so many lawyers and agencies available for Appeals.  WHY!?? Why am I going through this to find out theres a 2% chance I’ll get accepted no matter what my condition.  Why not just skip to the appeal and save everybody a lot of time and effort?  I had to file out a questionnaire that was 20 pages long. It had to be filled out by me alone. I CANT WRITE!!! I tried calling my local Social Security office to ask for assistance or tell me my options and they never returned my call.  I had 2 days too file the paperwork. I used my really old scanner/printer and downloaded a trial version of photoshop scanned the 20 pages and created text boxes in the answer parts, typed my answers and merged/flattened the image to find out I didn’t have ink. Ran to the store bought $30 ink. loaded it, printed it. The instructions were very specific it had to be returned in this particular envelope and include these specific documents.  No matter how I folded them 23 pages DOES NOT fit in a standard envelope!  I did my best and I think it was a day late going out.  It took me THREE days to use a mouse for photoshop. Something that would have taken minutes if I could WRITE.  All I could do was imagine people who were REALLY wrecked with a handicap….If it was so difficult for me how does anybody go through this?  To find out that only 98% will be accepted? It hurts to think about.

Incidentally, if anybody is reading this and they know of how I could have filled out that form better than how I did it. PLEASE tell me!  (Outside of taking a taxi to the social security building) How is one supposed to fill out forms? Does everyone who needs to scan documents use a trial version of photoshop?  I think I don’t know something that everyone else knows so PLEASE TELL ME!

On a happier note….I began a new series of oil paintings and I’m really excited about them. They’re very challenging because I am attempting actual form.  They are animals.  Silly strange abtracted forms…but forms none the less….more later….

 

ego and art

Posted by on Sep 9, 2012 in blog | 0 comments

ego and art

I woke up this morning as if I’d woken from a decade of sleep.  I feel new.  I couldn’t wait to paint. Even with its restrictions.  I have always said that if I don’t paint I get sick and to a degree it has always been true. I know the last 5 years I have not painted my fair share…but MS?  Some people may call it a hobby, others a meditation or divination.  All I know is it makes me feel good. I have always considered the act of creation far more important than the creation itself. Many times I’ve discarded the work upon completion.Rarely showing anyone what I made.

That is until in Brighton England in a small pub I casually offered up my small trophy of wisdom to a local and he let me have it.  He told me how selfish to take a gift from God and horde it.  What a crime to hide your talent from those who could be deeply impacted by it. What a world we’d live in if everyone shared my belief! There’d be no architecture, literature, sculpture, theatre….   I had always thought just the opposite to be true.  He said even if I didn’t like it, who was I to judge…it could still influence a greater work of art.  Who knew?!

It was so important to me to create, that I never wanted the ego to get in the way. I was offered scholarships and bonuses for some great schools and refused because I didn’t want to create for fashion or design. I didn’t want to resent or trivialize the one thing I loved…not just more than life itself but because for me it was life itself.

Seems ego always creeps in somehow…Years ago I imagined a chair and told the ego “not now! sit down.” Today, when I painted I treated it like a leaf falling from a tree and drifting down a river.  Each time a thought popped up it fell and I saw it and let it go.  It was ok to have that thought…just not to hold onto it….more calm, understanding, peaceful.

I feel good today and I know it’s because I painted.  I still have pain and my hands are funny from the MS but I don’t mind it as much today….and heck when its dry I may even share it with the world!

First time painting again, Sept. 7th, 2012

Posted by on Sep 8, 2012 in blog | 0 comments

First time painting again, Sept. 7th, 2012

It was difficult walking up to the plate.

My hands have been improving incrementally. But nowhere near normal.  Can barely hold anything and dropping things more than holding them. My procrastination has led me to a clean house and a very nice nest to paint in.  I rearranged things for weeks before entering with my wobbly self.

Took me hours to sit down and actually begin to open tubes of paint….then of course I noticed how the brushes weren’t according to size and paints not according to colors…Finally when it did come to actually putting paint to canvas…it was a new world.

It really occurred to me how much of my functions I did lose. Not that I couldn’t do it.  Just the obvious things I took for granted. Things not behaving as they normally did. Normal is gone.

In a way I’m happy to be able to explore this new world.

 

affording DRUGS

Posted by on Aug 24, 2012 in blog | 0 comments

affording DRUGS

The Clinical Trial I am in is wonderful because I have the top MS Research doctors at my fingertips and they have a close eye on me. Monitoring my progression, testing my cognitive awareness, king regular MRI’s and EKG’s etc. Not to mention the Free Drugs…a placebo and/or a nice good (very expensive) treatment for MS Rebif/Ocrelizamab…Rebif estimated $250 a syringe, no street value for the other.

What they can’t do is provide insurance. If they don’t have a sample of medication donated to them, then all the can do is prescribe it. In this case my problem is PAIN. I have excruciating burning in my hands and an electrical pulse throughout my spine. I thought this was spasticity but these great Clinical Research doctors said nope. Which is great cause my other neurologist said thats what it was and none of the medications worked. Now I know why.

The Research Neurologists put me on Lyrica. It worked after incremental increased dosages…the problem with that is I used up all their samples. They wrote me a prescription but it was $300. I don’t have $300. (that was WITH my prescription discount cards)

So they prescribed me Gabapentin. I’ve been taking HUGE amounts of this drug for weeks now. It costs $56 with the discount card. It looks like a giant Flintstone like bottle of pills. Im taking 4 300mg pills 3x a day and it has NO EFFECT.

I called the doctors yesterday and I told them its an awful lot of pills for no result and asked if I could discontinue them, they said keep taking them and they now added another prescription I have to start today.

They also commented its a shame you don’t have insurance because the Lyrica worked but there is no generic of it….aurgh.

I did some research on other MS blogs and found Medical Marijuana was the ONLY thing that helped their pain. I looked into it. There is a local clinic and dispensary. It costs $150 for the clinical visit and $150 for the State fee to get the medical card, THEN you have to pay for the marijuana. So again over $300.

I looked into the Obama pre-existing condition insurance. Its around $200 a month but in speaking to doctors, RN’s and pharmacists they say it doesn’t cover poop. It says it covers a lot but when push comes to shove you still have to pay full price for prescriptions.

I’m trying hard not to get discouraged but the combination of the pain and the politics is tough.

My Simple Daily Routine

Posted by on Aug 24, 2012 in blog | 0 comments

My Simple Daily Routine

Daily Routine since the MS diagnosis:

7AM– wake up, take prescription drug Gabapentin. (4 pills 3x a day)

7:30AM – Exercise. for at least 1 hour do Yamuna body rolling. (its an amazing exercise using a small ball. It’s a deep massage, yoga and a chiropractor all in one exercise.) Massage is highly recommended for MS and currently not an option financially for me so this exercise is perfect. (plus I think I’ve grown an inch or two since doing it!)
http://yamunabodyrolling.com/

9AM – Blend a Green Smoothie. It varies every day. I read somewhere that it is not good for us to eat too much of the same greens. In the wild, animals get a feeling of sick when eating leaves from the same plant so they move onto the next plant. This is not only natures way of allowing the plant to survive but also letting the body of whatever beast to know it has all the nutrition it needs from that plant. neat, right?

Todays smoothie was the stems I save from my Kale chips, a handful of spinach, frozen cherries, a chunk of ginger, green tea w/ lavender, 2 tbs flax seed.

My favorite Kale Chips recipe is from Dr. Wahl:
http://www.terrywahls.com/eating-the-wahls-way

Kale chips
1 bunch kale (remove stems – save for smoothies)
1-2 tsp sea salt, 1 tbsp vinegar, 1-2 tsp black pepper, ½ tsp cayenne pepper
Mix seasoning with kale (it will shrink by 50%)
Add 1 to 2 tbsp walnut oil and ½ cup nutritional yeast to coat leaves
Lay leaves on dehydrator tray and dehydrate at 95 degrees overnight or bake in the oven at 250 to 300 degrees until crispy, checking every 15 minutes till crunchy.

10AM – Take vitamins: B- Complex, Co-Q10, MSM, 5000 iu Vitamin D, Tumeric

– Drink a table spoon of Diatomaceous Earth (food grade!)
http://www.earthworkshealth.com/How-Diatomaceous-Earth-Works.php

I was skeptical at first eating dirt and all, but wow I feel the difference since I’ve been drinking it. I mix it with a juice in a small glass, stir it, drink it fast. (Its silica and does not break down in the liquid.)

11AM – watch an episode of a classic tv sitcom, father knows best, giligans island, bewitched, my favorite martian, dobie gillis, etc. (simply because it makes me so happy)

12PM – meditate for 1 hour (or as long as needed)

1PM – cognitive exercise 1-2 hrs : read, write (type), attempt to draw, do puzzles.

2PM – snack on Kale chips or some snacks cake of some green-ness.
– take prescription (Gabapentin 4 pills 3x a day)

3PM – Follow up w/ doctor phone calls , billing, business stuff that needs doing, etc (not fun)

4PM – Gentle Yoga 1 hour – Gentle Practice DVD is perfect for my limited functioning
http://www.amazon.com/dp/B0012KK6QU/?tag=hyprod-20&hvadid=7607011419&hvpos=1o3&hvexid=&hvnetw=g&hvrand=1234228970735024702&hvpone=&hvptwo=&hvqmt=&ref=asc_df_B0012KK6QU

5PM – do housework that Im able to do. (i like the museum cleanliness feeling so its hard for me to live in clutter. My mind seems to be calmer in clean. Don’t know why)

6PM – watch an episode of Star Trek and/or Nova (cause it makes me happy)
– while watching tv exercise hand as much as possible with this crazy device that seems to be working:
http://www.amazon.com/gp/product/B001PPCLI8/ref=oh_details_o01_s00_i00

6:30PM – make dinner. (no gluten no dairy) Grass fed Meats, Greens and Sweet Potato Tator Tots etc. or Salad.

8PM – Rebif (interferon) Injection. In arm, butt or thigh.

8:30PM – watch whatever Hulu offers us that night for an hour or 2 – Darren Brown, Daily Show, Eureka (cancelled 🙁 ), Grimm, Warehouse 13, Psych, etc.

10PM – listen to old time radio show or read. Currently listening to “Our Miss Brooks”
– Take Prescription (Gabapentin 4 pills 3x a day)

11PM – sleep.

Tantrum

Posted by on Aug 12, 2012 in blog | 0 comments

Tantrum

Feeling low these last few days. Body aching, the injections I take 3x a week…well it seems the needle is getting bigger with each shot. My thoughts are going to places like…”maybe thats enough shots, maybe its time I get a job, maybe if I stop the shots and get a job I’ll get better.” This is impossible I know. Yet, thats not the point. Im done with this whole thing. The being immobilized, the injections, the lack of income, the bills, the heat of Tucson. I’m used to having control. I’m used to fixing things…

I see Im just that little girl, laying on my belly flailing my hands and feet throwing a tantrum…knowing I need to surrender, have patience, listen, learn, expand…I know it’s all as it should be. Breathe.

Pier Fishing

Posted by on Aug 7, 2012 in blog | 0 comments

Pier Fishing

Bob Dylan had said writing songs was like going out on a pier and casting a line out….Sometimes you pull in a huge one, sometimes the fish just aren’t biting…He went on to say, currently the Beach Boys had taken the pier up stream from him and were pulling in all the big fish.

I think all artists know its not them creating. The art is going out to the pier. Going out to the end of that pier is sometimes a courageous feat in itself.

I got up the nerve to pick up a pastel chunk and draw today. …first time since the MS hit. Pastel cause is big enough to grasp with my hands being weird.

Unexpected emotions and peculiar lines emerged. The most intense flood of creativity enveloped me. My limitations of application stifling and binding me in a cruel cruel way.

Imagine a flood of rapids funneling through a straw. A straw that has fruit at the bottom of the cup so it stops up occasionally…(my metaphors could use some work) my point is Im elated that I have so much creativity to express, Im crushed I haven’t the faculty to do so….like a volcano not erupting because its got a chicken sitting on its top….(…metaphors still need work…)

Its funny when a blank canvas is in front of you. You have all these ideas, thoughts, plans. You put the hand to it and suddenly a whole different journey presents itself. Nothing like you had planned. Sometimes the destination is disappointing. Sometimes its an extraordinary expedition to far off places that you never knew existed. You can plan all day long but until that hand hits that canvas you’re whistlin’ dixie.

Oddly enough though, turns out sometimes those results I think are a disappointment, end up lighting someone up when they look at it. It makes me and my philosophic heart ponder the reasons and realize ONCE AGAIN that its not the judgement, the thoughts, the ego, the buyers and sellers, critics…its always always about the DOING. Ironically sometimes the hardest thing to do that…doing.

My whole life its been my doubt stunting that doing. Today I got up to the pier and it was my hands, my dropping things, the line not going where I asked it to go. And worst of all my longevity…I had to stop physically when my spirit was just beginning to soar.

Blessed to know that there are worlds of creativity ready to come out. Its my new challenge to figure out the medium of which I can release it.

Sisyphus and Prometheus

Posted by on Aug 5, 2012 in blog | 0 comments

Sisyphus and Prometheus

Keith and I have had an awful flu the last week. Keith can’t not go into work or he’ll lose his job…so we were feeling much like Sisyphus and Prometheus. I’m the bound one, he’s the one under the rock. We know things will get better….it’s again, a day at a time.

I had piles and piles and piles of Social Security forms to answer this week. They mail these forms and say it must be filled out by you by hand or typed. What does that mean? I can’t write and who has a typewriter? It took me a week to scan the pages and enter the answers into the computer and print them. It occurs to me many many disabled people are far worse off than me How could they possibly do this. I know many hire lawyers but if you could afford a lawyer would you need disability?

Mind Boggling.

We sit in a pile of bills and I hope to get some wind of energy and inspiration to paint. I know it would do me a world of good and maybe I can earn some money too. This being bound is really trying to teach me this patience thing. Im not sure I can wait.

Nurses Can Fly

Posted by on Jul 28, 2012 in blog | 0 comments

Nurses Can Fly

This MS journey has taken me to so many interesting and amazing places. I’ve been clear I think about the frustration, pain and confusion…but what I haven’t really delved into was the wonderment. I had to go deep and meet myself at a new place. I had to open my eyes and ears in a way Ive never done before. I hate to thank MS for anything but the blessings Ive received from this damn thing has been unbelievable.

In only 3 months Ive become a better person. My heart has opened to envelope new depths. My eyes have discovered new worlds filled with amazing feats.

On the ground level, I now appreciate the strength and fortitude of the handicapped, weak and injured. But the most intriguing discovery was Nurses. (note I capitalized it with my new found respect.)

The Nursing field has redefined itself to me as a lair of Superheroes…all undercover doing amazing deeds and going far beyond the capabilities of mere humans. (Im sure they can fly). Nurses are the embodiment of selfless giving, compassion, intelligence, humility and strength. Ive seen innumerable times (sometimes through glazed eyes) a Nurse who has worked 18 hours straight aiding several patients who should be in the ER.

The Heroism is disguised deep within. To look at them, they are disheveled, worn, exhausted and yet as soon as the tend to you personally you see a sincerity in their eyes and voice. Attention to you personally like you were the only patient they have ever known….I ask HOW is this humanly possible?

Most doctors barely look at you, maybe its because they’re too deep in the medical legalities, formalities, literalities and agendas. Im sure they have their share of good intentions…

Nurses around the world…I bow to you.

Mad as Hell

Posted by on Jul 26, 2012 in blog | 0 comments

Mad as Hell

I would like to think that I’m not just writing this to write this. I’m hoping in some small way i can do some good with these entries. Maybe inspire, relate or even make someone smile…but I must confess my intention may not be the reality. I sit here at this moment filled with anger and want to just vent. I know it doesn’t help me to swim in circles in the negative gush of my minds whimperings. Thats where the duality comes in…My “higher” wiser better self says…yes, you are exactly where you should be and all is good. I KNOW this to be true. theres no doubt in my mind. in fact I think every human on this earth knows that on some level at the best and worst of times.

It’s just this daily grind, as we call it. It gets so frustrating and I also i’m not alone on that.

Let me just tell you my day yesterday. woke up early had 9 liquified cups of Kale, flax seed and vitamins, meditated, exercised and went to a 10 hour long infusion at the research clinic. Again, they also took 10 vials of blood and did 2 EKGs etc. The 10 hour infusion was fine, the load of benadryl and other misc meds cocktail made my eyelids lead and for hours I glimpsed parts of Gilligans Island on the TV propped in front of me.

They gave me a prescription for the pain Ive been having and called it in so I could pick it up on the way home and begin it immediately. I used the discount card I have and it came to $305! I don’t have that. It might as well be $40,005. There is no generic version of this drug. (Lyrica) The pain is , burning in my hands and an electrocution feeling down my arms and back that is continuos and sometimes unbearable.

A friend suggested medical marijuana. i asked my doctor (at the research clinic) about it and she said yes plenty of the patients in the trial use it and it reduces their pain, but she cannot prescribe it. It is legal in AZ but theres a technical loophole that she will be blacklisted if prescribing it and most doctors agree. I did find a doctor however that will prescribe it but there are no dispensaries. Im not a drug dealer! Im not even a drug user! (since I can’t afford my prescriptions!) Why is it every system set up in this United States is here to facilitate the abusers of the system and not in any way assist those who need it!!??

Why am I treated like a leper for not having insurance, when I did my darndest to get insurance. Why am I treated like a lowly leach when I apply state assistance when I’ve paid my taxes since ’86 and in no way intended to get MS and need assistance! Why am I treated like a heroin addict when I ask a simple question about the medical marijuana prescription? I’m mad as hell…

The Diet

Posted by on Jul 24, 2012 in blog | 0 comments

The Diet

Ok. The Diet is winning. I mean killing me. The Paleo Diet, also known as the “caveman diet” because it’s based on the hunter gatherer system of eating. The philosophy being our bodies aren’t made to digest anything that can’t be hunted or gathered. Which means: No gluten, no sugar, no grains, no dairy, just greens and grass fed meats, 9 cups of greens a day. phew. After few months on this diet I’m about to explode in a frenzy of chili cheese pancakes with maple sugar and chocolate sprinkles and beer battered chocolate cheese balls in gravy.

I know this diet is good for me and nutrition is everything. But Greens greens, greens, greens greens! I’ve got a blender and Ive been making green smoothies to consume 9 cups of greens (an otherwise impossible task) but I can’t imagine eating like this the rest of my life. I am so ingrained in the American Diet of burgers, pizza, tacos, fried chicken and cheese cheese cheese! It’s hard to wrap my head around this new way of thinking. Its less about what i eat and more about what I think i want to eat. Brainwashed.

I have the gluten free foods from the health food store. The vegan cheese that is very mysterious and some things to mix with the Kale in the blender to make it not so vicious…

Embracing the new life, takes lots of patience and letting go of old habits. yep.

Monsooned

Posted by on Jul 24, 2012 in blog | 0 comments

Monsooned

Feeling wrecked today. Thinking it might have something to do with the humidity. Its Monsoon season here in Tucson. The clinical trial doctor is trying to help me with the strange pains in my arms and hands. To describe it is difficult, its electricity burning and compressing. The palms of my hands are burning. She gave me samples of Lyrica, a drug that was made for fibromyalgia. The dose was 300mg a day. taken morning, afternoon and night. At first it would knock me out cold, which made me think yeah thats a solution I’ll sleep through my life…but I adapted and didn’t fall asleep. She called me this afternoon and asked me to come into the clinic to pick up a prescription.

I really shouldn’t be driving at all with my limited functions… but the clinic is literally 3 exits from the freeway and I live a few blocks from the freeway so its short and easy. Not so.

As soon as I got on the ramp to the I-10 a downpour hit…The Monsoon. I kept myself together. Growing up in Buffalo I know how to handle myself in extreme driving conditions. Unfortunately not everyone else does. I had zero visibility and the car in front of me on the freeway was stopped. Luckily I was able to stop in time and the flood lifted me (the car) to the right of the stopped vehicle. I was afloat, adrift and the flow brought me safely to the side of the road.

Just a few yards away the world was dry as a bone. Strangest weather. I got to the doctors and took the elevated access road home. The Monsoons isolated drenching was still between the two exits when I returned. Bizarre. I got my meds but I can take a hint, I won’t be driving for a while.

Incidentally, the prescription I picked up was $305 WITH my discount card and I couldn’t afford to get it.

WHY

Posted by on Jul 21, 2012 in blog | 0 comments

WHY

Today I feel as if I’ve been hit by a Mack truck. I’m not certain why. I’m really not certain why of anything these days. I’m trying to pay close attention to “cause and effect” so I can determine which foods to not eat, which meds do what to my head, which exercises help or hurt….but it’s a big jumble of scribble. There’s just so much happening at once I think I just need to surrender to it. Not the MS! No I will never give into to it! Surrender to the WHY. It’s making me crazy. A bad kinda crazy, not the crazy that has made me who I am, I like that crazy. Hurting so thats enough for today. Keeping the Faith. xox

How-To Manual

Posted by on Jul 20, 2012 in blog | 0 comments

How-To Manual

I want to share this w/ everyone….back in May when I lost the use of my hands…my Poet/Writer friend wrote this poem for me. It brought me to tears as it was so exactly how I felt. Empathic as he is…

How-To Manual

Hands reach, instinctively,
because they understand
what the mind’s manual gears
are sometimes too tight
or slow to grasp:
the necessity of
shrinking distance
through first contact;
the dream-life of prayers.
– John Biscello

http://www.csfpublishing.com/

Social Worker

Posted by on Jul 20, 2012 in blog | 0 comments

Social Worker

For months I’ve been trying to find a Social Worker…not knowing how to navigate the system of benefits. Many people have told me they’d look into it and nothing has come of it. Then today out of the blue, a social worker called trying to confirm my hospitalization dates. Seems there are no records of my hospitalization..Billing has no problem, they have itemized jello cups, but all other records seem to have been lost.

Discouraging news, she told me 99% of social security applications are denied the first 2x applying, Many people on their third application hire lawyers…I don’t think I have that in me. Such a long road ahead. Months of waiting for a decision, then a 5 month waiting period once accepted…denied 2x then a 2 year awaiting period to get on medicaid…seems like most people will be dead by the time they get the benefits. Maybe THAT”S the screening…simply, survival of the fittest.

She also said the AZ benefits have been limited to those who have children. So unless I have a baby I won’t get anything.
It’s looking Grimm. If social security comes through…apparently many years down the road…it will be a $900 monthly allowance.
Keith is heroically going into his job at 5am – 9pm driving to Mexico 300 miles each day to work in the 110 degree weather Only to break even when he gets his paycheck because of the gas and equipment loss.

Ok. Enough feeling sorry for myself and venting.

I can focus my energy on creating art. using my toes and teeth if need be. We will get out of this treacherous heat and move to California…San Luis Obispo? Somewhere 60-70 degrees as prescribed by the MS neurologist. We will both go back to school. My MS will go into remission and all will be good by the Grace of God!

Today

Posted by on Jul 20, 2012 in blog | 0 comments

Today

It’s really a day at a time, some days an hour at a time. Today was tough one. Dropping most things I tried to carry and weird sensations all over. Like electricity pulsing and shaking.  I can’t seem to get my feet warm and my torso is afire.  Its all weird.  I did get a cooling vest donated from MSAA. It has ice packs in it and looks like a bullet proof vest…it helps the torso but I melt that ice in minutes…

Clinical Trial

Posted by on Jul 14, 2012 in blog | 0 comments

Clinical Trial

My neurologist (the headache specialist) told me of a legendary MS specialist who no longer practices but is in research.  She spoke of her as a deity.  I of course called her office where I was told no she doesn’t take new patients, I asked about the research and the secretary knew nothing about it.  For a week of several attempts speaking with many receptionists and being asked ‘Who is your insurance provider”…”Oh Im sorry I can’t help you”  It amazes e how Uninsured are actually treated like lepers. It’s remarkable. When and Why did this happen?  In any case, eventually my persistence wore someone down to give me a number of someone who might know someone…I soon got to a alzheimers research facility and then got the number for the MS research!!!!

I called I got reviewed…they said they were at the end of accepting participants but come in anyway for tests. Phew!  So the last 2 weeks I’ve been poked and prodded, stood on my head, walked, had mRI’s something around 30 vials of blood taken, EEG, EKG’s, Cognitive tests, eye tests, and finally an 8 hour infusion.  (I was told there was a DVD player in the room so I brought Young Frankenstein- but I was so pumped full of drugs I saw only glimpses of the movie through my heavy eyelids…although the nurses enjoyed it!)

The research is studying a new drug called Ocrelizumab.  Its supposed to be the one to beat all others. They give me an infusion of 600mg of Ocrelizumab every 6 months, and I continue with the Rebif injections 3 x a week. One of these drugs is not who it says it is, ONE is a placebo.  but its a double/trip[le blind test so nobody knows.

The very good news is I am being treated by the best doctors in the field, getting attention for my ailments, receiving the best drugs and its all FREE!!!!!

There are still a mile high pile of bills, I also need to relocate to a cooler climate asap, because the average 110 degrees here is a terrible thing for MS (but no worries I can continue my research). Also Keith is working on rooftops in this horrid heat and its killing him slowly….We’re looking at California, cause its just a hop left and the medical coverage is far superior to Arizona.  We were looking at San Luis Obispo because its “the happiest place on earth” and its an average temperature of 60-70 degrees and rural.  I am feeling hopeful.  I know everything will work out. I know I’ll get the use of my hands back and I’ll lick this thing.  It’s such cliche but I really couldn’t have come this far without the support of my friends, family and remarkably SO many strangers! I don’t know how I got so Lucky!

Thank You!!!

 

 

Unknowing

Posted by on Jul 14, 2012 in blog | 0 comments

Unknowing

The Scariest thing was not knowing what was happening to my body. Unable to do what I took for granted. Walking, Writing, holding things, shaving, showering, eating my whole world as I understood it, just gone. The worst feeling was not knowing how far it would go. Getting an MS diagnosis was in fact a good thing. I then knew what it was, could put a name to it, could see how to fix it. That UNKNOWING was the fear.  Now I could focus my attention on recovery.

With the support of my loving friends and guidance from some new friends put together a plan and Ive been on that path since. Exercise, Meditation, Strict diet of Greens (9 cups a day) and fruit.  There was a pharmaceutical company that gave me Rebif (interferon) for 1 year. Thats 3 injections a week. They don’t know how it works, just that it stops the progression.

Bills of course are flooding in from things I don’t even remember doing in the hospital, $13K and MRI’s, X-rays, etc, etc,doctor visits, etc. Currently up to the ceiling.  I applied for the social security disability and will most likely qualify, because I can no longer work. But, there is at least 5 month waiting period and then its a check for $900 a month.  How they expect people to survive 5 months..

Catch up on whats been happening

Posted by on Jul 12, 2012 in blog | 2 comments

Catch up on whats been happening

Its been a trying year for a lot of people…it seems like everyone I know and everyone they know are facing challenges beyond what we thought we could handle. All I can do is share my story. Hence the blog. Now, I confess up front I know not what a blog even is. Seems like a diary to share with friends? Im not so up to date on the web lingo, form or process. I’m not a writer…thats why I draw!   But let me share my story best I can.

I was born a poor black….no.

Lets start last year, in this most recent chapter of my life…
I was living in Taos NM w/ my wonderful husband Keith and our 2 dogs monkey and monster. We lived in an earthship, an old mechanics garage, and too many other places for the 5 years there. I mostly worked as a gallery director, really doing my best to help the local artists sell their art to the passers by.

I got a call from my mother in Tucson in August saying she was diagnosed with cancer. Keith and I immediately began looking for jobs and a place to live in Tucson. It seemed a path opened up quickly for us. I got a job at a Theatre Company andKeith got a job as a independent contractor with Direct TV. We moved to Tucson by the end of August. Soon after arriving my Mom was in the hospital getting things removed that really shouldn’t be removed. (innards of importance) The Cancer soon entered her blood stream and she died suddenly in mid December. The job I had at the theatre had not been what I had hoped. It was originally supposed to be full time with benefits.

Being a struggling non-profit, the penny pinching made it a job w/ no benefits and really difficult hours…so I found a job at B E Aerospace. A wonderful place. Huge and slick. I was in the painting department. Painting the inside of airplanes for British Air, Lufthansa, and many of the super high end jets. shiny and gold. I was brought on as a temp and after just a week they told me they wanted to bring me on full time. I just need to wait a few weeks. Their benefit package was almost 100% coverage and they had asked me if I would be interested in transferring to Ireland because they needed painters there. It seemed like things were turning around for us and everything would be peachy and dreamy.

Since February I noticed my body doing odd things…my foot would drop while I was walking. My legs wouldn’t do what I told them. I couldn’t run. I was in the road and a car was coming, when I tried to run I fell. Something was wrong but I didn’t know what.

I had been trying to get help from the government so I could get an MRI. Financially I was told MRI’s are $1200-$1500 without insurance. January a new law began in Arizona that unless you have children you cannot get assistance. I told them I’m not going to have a baby to get an MRI!

it was May, my knee had been bothering me for a couple months, I thought maybe I pulled a muscle and started wearing a brace. Then my balance started to go. I could walk straight and in narrow walkways I would stumble. I noticed at work a few people looking at me sideways, like I was drinking at lunch…In one week my right hand started to weaken. Quite a bit each day. I was dropping everything. I couldn’t type or use a mouse and I was trying to hide it and compensate by using my left hand. My boss noticed and commented it just might be tendonitis. By Friday of that week I could not use my right hand at all…and worse yet my left hand was quickly following the same progression.

I got in to see a doctor a general practitioner, who although very sweet and quite possibly a brilliant doctor could barely speak or understand english. After a long difficult visit where he was trying to get me in the emergency room and I was telling him I had no insurance and just need and MRI…I finally got him to convince his nurse to call around for a neurologist. Myself I was able to get an appointment 2 months from then. What I knew about MS (which I suspected I had) the progression could not be reversed only stopped. So I knew waiting 2 months at the rate I had lost my hands I would most likely be in a wheelchair or worse by the time I got in to see a neurologist to get an MRI. Luckily there was a headache specialist Neurologist that could see me the next day. As soon as she looked at me she admitted me to the hospital where I spent the week getting MRI’s, a Spinal Tap and Steroids. They told e I would be admitted directly into a physical therapy facility for recovery for a couple weeks, then the mood changed drastically when they found out I didn’t have insurance. As soon as they finished the spinal tap I was discharged and told to have someone come and bring me home. No explanation.

It’s really not in my nature to ask for help. In fact, I try to stay pretty private about lousy things that happen because I don’t want to bum people out or burden anyone. But I don’t know why I did it…Maybe it was being so overwhelmed and fearful. i simply posted on Facebook that I was in the hospital and they found i had lesions and was diagnosed with Multiple Sclerosis.
I can’t tell you the overwhelming response I got from friends and even strangers!
Friends created fundraising sites for donations, ideas springing up for benefit concerts and shows! So much Love and Comforting e-mails and posts. I never gave Facebook much notice but WOW. It linked me to a network of overwhelming Love and support that I never would have known existed otherwise.
I realized for the first time in my life how NOT ALONE I really am. What an incredible gift I had been given!  I was truly lifted from the depths of oozy yuk to a place of hope and strength and just a knowing that everything would be fine.