Tag: degenerative disorder

Botox for Muscle Spasms

Posted in disability, Long Term Illness, UncategorizedTagged , , 2 Comments

Two weeks ago, I was given Botox shots in my lower legs to help stop muscle spasms, cramps and relax the over-tonation of my calves that result from my Hereditary Spastic Paraparalysis.  I got about 100 shots — just kidding, it was more like a dozen.   I have been worried about loss of sensation in my body, but boy, I felt those shots!

I love my neurologist, who is kind and patient and always gives me lots of information.  He doesn’t mind that I ask the same questions over and over, or that I go off meds then back on, then off again.  He has that rare quality of letting me have some say so, and some mood swings, in my treatment.  He figures a degenerative disease is a hard thing to deal with.  I know he sees patients who have a lot worse symptoms than I do, but he knows my struggles are difficult, too, and honors that.

When I leave, he always clasps my hands and bows, thanks me, and tells me to go live my life fully.  (He’s not from the U.S.)

Yesterday, I had my check up and we’re pleased with slight relaxation of my calves and that the night time cramps have been reduced (though my feet still twitch).  I’ll get shots every 3 months, and hopefully things will continue to improve.  Not to the point of actually walking, but a bit of the damage in my legs will be alleviated and I’ll be more comfortable.

Since my doctor is the kind of of person who spends quality time with his patients, he’s often late for our appointment.  I can hear him in the next examination room assuring or laughing with a patient.

I usually read, but yesterday I drew in my little notebook from the posters on the walls.

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From a Parkinson’s Disease poster.  You can see the ghosts of previous sketches and writing in the scan–it’s very thin paper.  It’s a very thin page between who we were and what we’ve become.
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From a poster on migraine symptoms, the brain so complex, so efficient, but so vulnerable to dysfunction, so much can go wrong.

Life is so complicated and precious.  I think of how I’d not get any treatment at all if I didn’t have Medicare and Medicaid, so I’m so grateful for that.  The shots are going to cost thousands of dollars as time goes by.

Decades ago, I heard a doctor speak of the cruelty of numbers, how we try to budget the quality of life, and it is something that can’t be contained within the small world of economics.  It’s a thought that’s remained with me throughout my life.

Life doesn’t fit in a budget. Health, in all it’s manifestations, is priceless and precious.  I have a handicap that has reduced my ability to move, but very expensive treatments cause small improvements, relieve pain, and opens the boundaries that biology has randomly built around me.  I take part in the community, I cultivate beauty and delight for those around me.  I serve as an example of what health looks like, even when compromised, I am a healthy person.  Handicaps and illness are a part of life.

I hope we can all keep working to make sure healthcare is available for everyone.  We are all going to get sick, have accidents.  Upheavals in our health are lurking inside us.  Let’s keep working to understand this, honor this, and make sure everyone benefits from the medicine and care that is available.  Let us mind how we go.

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He gave me a rainbow

~~~

Thanks for reading my post.  If you like it share it.  If you find a typo, please let me know and I’ll send you a thank-you postcard.  

You can now follow me on facebook here,  Instagram@joymurrayart.

You can get prints and cards of some of my work on Redbubble.  They also print my work on lots of other items, including phone skins, tote bags, shirts and journals:

https://www.redbubble.com/people/JoyMurray?asc=u

If you’d like to support my art and writing, please consider becoming a donor on Patreon.  If I get enough supporters, I can make this blog ad-free!  Here’s a link to my Patreon page:

https://www.patreon.com/user?u=8001665

If you prefer to make a one time donation, you can do so at paypal.com  Please email me at joyzmailbox@gmail.com if you’d like details.

Return of the (almost) Daily Draw

Posted in Daily Draw, UncategorizedTagged , , Leave a comment

I’ve been enjoying my summer, but still sometimes I  feel my head’s a bit scrambled and I can’t concentrate on any one thing.  In my post on my Guerrilla Garden, I talked about being in a fallow period artistically.

One of the good things about keeping a journal is that I can track my moods much better.  So I know I’ve been creating, even though I feel a bit scrambled.  A few weeks ago I  tried to do a self portrait with a scrambled mind:

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Self portrait in pencil, acrylic paint and various papers

Sometimes, I think this urge to create I have is just some kind of curse.  Other people go about their lives, just living, not trying to capture a story, not trying to preserve, process and create things.  They work, they play, they cry, they get on with it.  I can’t remember a time when I didn’t feel I was slacking if I wasn’t creating something — a story, a journal, a piece of art.  I have no desire to be a famous artist or writer (I once wanted to be a famous writer, but now my writing is a personal thing, and a way of turning my world into stories.  Stories are how I make some fragile sense of the world.)

I do want to create and share.  I feel that art, whatever form it takes, is a means of communication and bonding with others.  I want to sell my art — we all need money.  But I create because I have to.  I get unhinged when I’m not working on a project.

So, when I feel adrift but that desire to create is still poking at me, asking why aren’t you working on something, and then not getting a clear idea of where to put my energy   — it feels like I’m being harassed by my own mind and heart.

But recently, someone I know suffered the loss of a loved one and in his grief, missed a lot of work, and then lost his job.  He had no creative outlet.  I tried to get him to start keeping a journal or to draw or something creative.  But he couldn’t.  Anything he created was “crap” he said, and made him feel worse.  He wanted his loved one back, he wanted his job back.  There was nothing to do with the emotions that flooded his life.  (He has found another job and is doing better now.)

My desire to be creative, my writing, art, scribbles, knitting, sewing, my re-imaginings, my hunger to find books that create stories out of grief, to see what art others have created, to look, to discover — all of these compulsions save me over and over.  Even in the deepest dark of depression or on the melting wings of mania, I have something to hang on to.  I have somewhere to put my emotions.  It’s a blessing, not a curse — though it’s funny how one can feel like the other at times.

About a month ago, a friend offered to take me to the pool with her three times a week.  For years, I did water aerobics and swam twice a week.  Getting out of gravity and into the cool support of the water felt so good.  It helped me with my transition from a walker to a wheelchair.  I didn’t always like going, but I went.

After an ostomy surgery and my break-up with my husband, I felt I couldn’t keep it up.  I was afraid and having trouble adjusting to my new ostomy situation.  I never had a leak in the pool, but the paranoia was there, and I eventually let it stop me from swimming.

But now the desire to get out of gravity and float a bit overrides my fear.  Besides, like most of the degenerative situations associated with my disability, I’ve grown used to it.  It’s just a matter of taking proper care and using proper equipment.

So I’ve started swimming again.

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Well, okay, I was most worried about how I looked in my suit.  I don’t REALLY care, but that body image paranoia just rears it’s ugly head no matter how body positive I genuinely feel.  I’m larger than I was when I bought my bathing suit, but it’s very stretchy.  And I decided my rather large goddess belly was a good natural flotation device.

And once I got in the water

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It exhausts me, of course, but that’s the weird thing about exercise, it wears you out but gives you energy at the same time.

I began to talk about my ideas with friends, sought advice on which ones to follow, what to concentrate on.  I also started drawing in my visual journal.  I hadn’t totally quit, but before it was mostly pencil sketches of the flowers on my porch and unfinished ideas.

So, I’m getting back in the habit, sort of, and ready to draw the daily adventures of a woman dealing with a degenerative illness, bi-polar disorder, and sometimes, unreasonable and unbridled delight — rolling around Memphis in my wheelchair, finding saints and sinners in my travels.

And taking the time to share.

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From last year’s visual journal

 

Thanks for reading my post.  If you like it share it.  If you find a typo, please let me know and I’ll send you a thank-you postcard.  

You can get prints and cards of some of my work on Redbubble.  They also print my work on lots of other items, including phone skins, tote bags, shirts and journals:

https://www.redbubble.com/people/JoyMurray?asc=u

If you’d like to support my art and writing, please consider becoming a donor on Patreon.  If I get enough supporters, I can make this blog ad-free!  Here’s a link to my Patreon page:

https://www.patreon.com/user?u=8001665

If you prefer to make a one time donation, you can do so at paypal.com  Please email me at joyzmailbox@gmail.com if you’d like details.