Friday, May 20, 2016

Best Day in a Long Time!

Yesterday I was cursing Mercury Retrograde to the hilt.  There were communication breakdowns, computer problems - and I had an upset stomach!

Today, however, it was just the opposite!  I'm SO happy! 

The communication breakdown got resolved, my stomach felt much better, and I went on a marvelous celebratory shopping spree.

But the very best part of the day was when I went to Toronto Rehab for my first appointment.  They measured the strength and agility, and were impressed by the results.  I was given water and then nectar to drink. That went well, as well as the consumption of toast and the apple sauce.

Unlike the SLP's (Speech Language Pathologists) at Mount Sinai, Dr. Bayley and Talia (an SLP) were optimistic and upbeat.  They were respectful towards me and were very encouraged by my swallowing results. Unlike the SLP's from Mount Sinai, they didn't tell me I should never eat orally again.  Instead, they broadly hinted that it might be possible, if things go well, the G-tube could be removed totally - or, it might be a combination of the G-tube and eating orally.

I'm so happy - I'm being listened to and being respected!

Sunday, May 1, 2016

Cripping the Stage

Oh my god! I actually went out last night and had a brilliant time! I went to see Cripping the Stage at Harbourfront Centre. Cripping the Stage was a disability arts cabaret featuring cutting-edge disabled artists from Canada and the United Kingdom. 

I loved all the performers, but my favourites were jes sache, Liz Carr, Laurence Clark and Mat Fraser.

I've actually known jes for years and greatly respect her art.  She talked about how it was like for her growing up with a disability and I almost cried because I could relate to her experiences.

(As an interesting side note, jes's dad and uncle ran the Bulletin Board System where Rob and I first met 28 years ago. Isn't life weird?)

Both Liz Carr and Laurence Clark poked fun at ableism. I love doing that myself so it was really enjoyable. I especially liked the part where Laurence Clark showed a video of himself telling people they were "inspirational" for doing mundane things like walking up stairs or eating ice cream. I hate it when able-bodied people tell me I'm an "inspiration". I'm just trying to live my fucking life like everybody else!

For the first few moments of Mat Fraser's song I sort of cringed and thought how corny it was, but then the words got to me and I actually teared up. It was a take on the song "There's a Place for Us" but instead of it being a love song it was a song of hope that one day all people with disabilities will be accepted and respected. 

I've had a bit of a thing for Mat Fraser ever since I listened to the podcast he used to host so I was thrilled when I got a picture with him after the show.


Saturday, April 30, 2016

So, Yesterday ...

I can paint again!

I called my dietician and told her I've switched to Isosource 1.5  (a new type of liquid feed for my G-tube) and had been on it for maybe four days. She sounded surprised and asked if she could come over to discuss the change. I said sure, come over after my appointment with Anita. 

So, after I was all loosened up from Anita's osteopathic treatment, Shavonne (the dietician) arrived and asked me how I was doing on the new feed. I said except for feeling a bit full i was feeling fine. She asked me how much I was taking and I said six containers a day, to which she laughed and said no wonder you feel full you are only supposed to be having 4 containers a day on the new Isosurce! And then we figured out that now I will be on feed for only four hours a day. Yahooooo!!! I can actually leave my apartment for longer periods of time and spend more time painting now. The new lift also helps allow me to paint too. 

I'm so happy!  I used to be on the feed for fourteen hours a day, then eight, and now four!

It's not total freedom but it's something.

Wednesday, March 23, 2016

Busy as Ever!

Like I said before,  even in recovery mode I'm very busy!  This is the first day in three days where I've actually had time to write anything.

All week I've been either interviewing potential employees or trying to set up interviews. And then one of my regular employees had an emergency, so things had to be arranged to cover her shifts.

I've been speaking with OTs and social workers re finding funding for my medical expenses, like nurses and bags and feeds for my G-tube. Now I need to look into getting a ceiling lift too.

Even though it's been almost 4 years since Mom  passed away I'm still prodding the accountant to finish up everything. Plus I had to go to the bank and get a monthly statement for my landlord to prove I'm not actually making millions of dollars.

Going to the bank was fun though. It was the first time I'd been outside in over two months! Today my dietitian increased my feed rate so it runs for eight hours, and said that I can take a break after four hours and maybe go outside again for longer periods of time!!! Plus, I'm arranging for another swallow test. I'm hoping to get off the feeds altogether or at least eat a bit orally.

Now I'm going to write emails, write to you tomorrow!

Friday, March 18, 2016

A Fresh Start!

Yesterday I was going to post notes from the six weeks that I spent in the hospital. (Yes, I was in the hospital with pneumonia and other complications.) I was also going to post pictures of me getting my hair cut. After my very stressful time in the hospital and recovering at home, cutting my hair felt like a fresh start. While it was happening I listened to Pink sing "Try" and "Shake it Out" sung by Florence and The Machine, which mirrored my emotions perfectly.

I was going to do all of this, but Bruce visited me, Leon dropped by unexpectedly, and I trained a new employee as well.  Even in recovery mode, I can't stop being busy.

I'll post the photos tomorrow ....

Tuesday, January 19, 2016

Tired But Wired

I won't go into details but I really really feel terrible.
And because of this, I've decided to stop posting every day until I feel better.

Monday, January 18, 2016

Hopeful ...

I went to the doctor today and she increased the dosage of my Baclofen. That's good.

She also put me on anti-depression/anxiety medication.   That's good, too, I suppose. I mean, I'll sure be glad to be free of this feeling of overwhelming sadness.  And yet, in a weird way, I feel terribly regretful and guilty by going on this type of medication because it's like I'm betraying Rob and my mom.

Sunday, January 17, 2016


I thought that my day off would make me feel better, but I'm feeling TERRIBLE!

No matter how many of my medications I take, I have intense feelings of anxiety; panic; depression - and terrible pain in my left shoulder blade!

If I'm still not feeling any better by tomorrow, maybe I'll go see my doctor ....

Saturday, January 16, 2016

Looking After Myself

Sometimes I look at my cats with great envy. They have little or troubles and only need food, love, play-time, and sleep.

Today I took a page from their book and focused upon what I really needed:  a day off.  Instead of going to the market this morning, I went back to bed and got some very well deserved sleep.  When I got up, I had breakfast, petted my cats, and watched several episodes of How to Get Away With Murder.  I had pizza for dinner and watched an episode of Reign.  Now, I'm waiting for Motria to come so we can watch Law & Order and eat pizza.

I'm so glad I didn't go to the market today. I'd been in tons of pain last week, extremely stressed out and depressed, and feeling nauseous as well.  I was probably over-tired too.

Next Saturday, I'll go back to the market all refreshed and sparkly!

Thursday, January 14, 2016

Overload of Thoughts and Emotions Part II

As I said yesterday, three things had upset me when I got home from counseling.

Let me tell you what they were:

  1. I had heard that Canadian rock star Kim Mitchell suffered a major heart attack. He appears to be able to survive, but in that single moment upon learning of this news I felt great sadness.  Rob and I used to love to listen to the music of Kim Mitchell and groove out at his concerts.
  2. I received a letter that stated that the mother of a friend of mine had passed away.  She was 91 when she died and had led a pretty good life.  It was my friend I was/am more concerned about. Like me, he has Cerebral Palsy.  In addition to this, he also has an intellectual disability and lives in a group home in Markham.  Also like me, my friend was very close to his mother and relied upon the many types of support that she gave him.
  3. On Facebook I learned that another friend of mine was getting a divorce from her husband of only a year.  I won't get into many details, but my friend has said that her husband became aggressive towards her.  Because my friend has a disability (Muscular Dystrophy), she never told anybody about what was happening between them.  She didn't want to be "any trouble" to anyone - meaning that she knew that if her husband left her it would follow that her family and friends would have to jump in and help her with her daily needs.
More about this later ....

Wednesday, January 13, 2016

Overload of Thoughts and Emotions

I went to counselling today and unloaded some things.  I felt better afterwards.

And then I got home ... and got three separate pieces of bad news.

I want to talk about it all ... or at least some of it.   However, I'm both physically and emotionally exhausted now.

Maybe tomorrow.

Monday, January 11, 2016


Despite an extremely sore shoulder, I'm determined to do more work on my portrait of Rob ...