Posts by The Wix

Phew!

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

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...

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Phooey

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

The 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...

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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. 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...

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Possibility?

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

CCSVI 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...

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A Global Friendship

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

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...

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moving forward

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

I 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...

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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

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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...

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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… A 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...

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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...

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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...

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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...

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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...

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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...

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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,...

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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...

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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...

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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...

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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....

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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...

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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...

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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...

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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/

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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...

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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…

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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...

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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....

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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...

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