Tardive Dyskinesia Update and Good News

As it turned out, my Tardive Dyskinesia was getting worse and worse, bad enough so that people were noticing.  My tongue was making my jaw move to the point that people assumed that my teeth were chattering, and said, “Gee, you look very cold!” or something to that effect.  Or they gave me strange looks on the bus.  Perhaps, also, the TD was getting into my jaw, but of this I am uncertain.

Well, Dr. P and I decided finally that it was time to lower the Thorazine.  Because of insurance (jeepers!) I am only allowed the 200 mg size of Thorazine, and I can’t cut them in half, so I am taking 400/600 every other day.  It’s working out okay, but I suspect it’s too soon to really draw any definite conclusions.

However, the good news is this:  The TD has nearly stopped.  Whereas previously, it went on all day long, just about all  of the time, now it is happening rarely, and not as violently as to make my jaw move at all.  In fact, I got no TD on Saturday until around 7pm.  I phoned everyone I had on my speed dial and told them the good news!  I was so excited!  The sad part was that most people haven’t a clue of the magnitude of this event, but I couldn’t contain myself.  I was bubbling over with joy.

Here are my previous blog articles on the growing problem I was having:

http://juliemadblogger.wordpress.com/2008/10/03/tardive-dyskinesia/

http://juliemadblogger.wordpress.com/2009/06/14/thorazine-update/

Contained in these articles are links to further information on TD.  Here’s another You-Tube I found:

I will not be able to raise the Thorazine back to the previous dose of 600.  Bringing the dose back up will worsen the TD.  It so happens that this is the tendency with many patients.  So this has been a decision I have made based on the fact that I have been stable for a long time.

I have been hoping to get off Thorazine entirely.

One problem I have noticed is that I have an increased sensitivity to caffeine.  I can drink tea but a strong cup of coffee jazzes me up, and makes me uncomfortable.  This is simply something to take note of.  If I have to drop coffee altogether, I will be very sad.  But I do like tea.

Knit-a-thon for Boston’s Pine Street Inn shelter for the homeless on November 7

Check out this knit-a-thon:

http://www.knit- a-thon.org/

They are asking for 9×9-inch squares.  Stay tuned for an “L L Greene” 9×9 original granny square pattern designed for this knit-a-thon!  I’ll invent one soon!

What a great way to use up your leftover scraps of yarn!  Don’t throw them out!

Even if you live far away, you can mail in your squares to help out.  Knitters and crocheters rock!

My hair–before, and after

Last Sunday, I decided to get my hair cut.  Malnutrition had robbed my head of healthy hair.  Here is what my hair looked like in July.  Already, my hair had suffered from poor diet.  This is the day I graduated:

Here is my hair on Sunday, the day I decided to get it cut.  You can see why I made this decision.  The braid had to go.  It was the thickness of a pencil:

Well, I got my hair cut today.  What my hairdresser, Nicole Cullinan, and I, discovered, is that my hair is actually curly.  I was never certain of this, because my hair has changed many times over the course of my life.  When I was growing up, it was wavy, but not curly.  Starting about a year after I began taking the drug Lithium, in my mid 20’s, my hair became curly, and it later lost its curl a year after I stopped the drug, in my late 30’s.  Why it is curly now is a mystery to me, but I do know that my hair will naturally change as I age.  I am now 52 years old.  My hair is still nearly as fine as it was when I was a child.  It also is not at all gray.

At any rate, here is my hair now, after I got it cut today:

I am totally delighted with my new look.  I don’t have to do a thing to it, just wash it and let it dry.  I even put a hat on it (it is cold out!) and my hair stayed just as nice as it was.  I think it’s great that I don’t look the least bit like my mother!  I am getting lots of compliments on it, which makes me feel great.

I would highly recommend Nicole as a hairdresser.  She gave me more than just a cut.  She gave me great advice.  She was kind and understanding about the nutrition problem, and suggested vitamins I could try.  She received fantastic five-star reviews on the Internet.  She is still taking new clients.  Her website is www.bostoncolorgroup.com and she is located conveniently in Watertown Square, Watertown, Massachusetts.  You need to call first for an appointment 617-212-6309 and tell her I sent you.

Paul Selig’s I AM THE WORD comes out June 24

You’ve got to get this book.  Pre-order it.  Paul Selig is an incredible writer, speaker, and medium.  Just read the testimonials on his website.  I have been to his Writers’ Healing Circle and it is amazing.  If you are a writer, or if you are anyone, you need this book.

www.iamtheword.com

The new initialed striped-trim sweater

Here is a preview of Puzzle’s next sweater!  I tried it on just to see if the collar fit.  It does.  It is stranded:

Note the detail of the pattern on the shoulder.  This makes a very thick weave, very warm.  The yarn is the same as the last sweater: Lamb’s Pride  Bulky by  Brown Sheep Company.

I haven’t done any knitting since returning home from the hospital, but I did an inventory of my yarn.  I am donating a bunch of it to the hospital, along with some instructions I assembled, a DVD, and needles and other supplies.  The patients all enjoy knitting there, and they really could use more materials.

I’m back!

I’m back from the hospital!

I had a miserable time.  They kept feeding me and feeding me, and in addition, they tube-fed me for nine days.  The naso-gastric tube was a tube that ran from a bag of feed solution up my nose, down my throat and esophagus and into my  stomach.  On the tenth day, I refused the feeding.  On the morning of the twelfth day, I pulled the tube out.  Every day that I ate and was fed, I felt as though I had just eaten a huge cake.  I felt stuffed–overstuffed–as if I had just eaten Thanksgiving Dinner three or four times in succession.  And this I felt after every meal.  Refusal of food meant more tube feed.  Accepting food and tube feed–and gaining weight–was the only way out of there.

You could look at it that way.  On the other hand, what I had been doing to myself before the hospital would have killed me sooner or later, so it’s a good thing somebody put an end to it.  It’s just too bad it had to take such a drastic measure to get it to stop.

So, I suppose I should be thankful….

I totally hate my new body.

But all that aside, I did get my dog sweater nearly finished.  Here is is on Puzzle:

The ends aren’t yet woven in, and there is a part underneath, the chest piece, that is only partly attached, that needs sewing up.  I’m done with the little legs.  I have revisions to put into the pattern, not many, but some, that I will put in tomorrow.  Stay tuned!  I also made a matching hat for myself:

See you all soon!