Saturday, July 30, 2016

Friends vs Doctors

I didn't go to the market today because I had been in so much pain yesterday. Like, the worst pain I've ever felt! It was all down to my BLOODY G-TUBE! I hate that thing!!!!!!!!!!!!!!!! (Thank god it's being removed on Tuesday ...)  I could (and still can) feel the tube rubbing constantly between my ribs. Also, at the  gtube site, below my left breast, there's been this thing protruding from the hole and it keeps getting bigger and bigger and more painful. It's been like this for 3 weeks.

I've had the nurse from CCAC look at it, sent pictures of it to my family doctor, and showed it to her substitute as well. They said "yup, that's normal. It's just skin growing." But none of them gave me any helpful hints on how to keep it from hurting. 

Today, however, my new employee Alison, who also works for a friend of mine who's name is Jenny, texted Jenny about this problem. Alison and I knew that Jenny once had a gtube herself. 

This is the information Jenny sent me:

    She has granulation tissue and a bit of purulent discharge
The red raised stuff is called granulation, it hurts a ton. Like a ton!
You can use silver nitrate, alum (the pickling spice) in a paste, or steroid creams/diaper rash creams to shrink it
The red tissue around the tube
you can use those things, on that red tissue, and it will make it shrink and go away
you can also use a bit of Emla or lidocaine cream on it/around it to ease some of the pain
Stabilizing the tube can help too, so keeping it secured and moving the least you can
Yeah, it's totally normal. That red tissue is formed when the stoma is trying to heal itself. It's not 
at all dangerous. Just really painful but it can be treated and the lidocaine can help a ton. Good luck and let me know if I can do anything else. 

It sure is more information than any "professionals" had given me! Thank you Jenny!  I'm in far less pain than yesterday.

This whole situation has made me wonder, what if before doctors did procedures they could refer people to a networks of patients who have had those same procedures. That way people could get a firsthand experience from the person who has already had the procedure. Yes, I know doctors would absolutely hate everything about that, but idealistically, I like the concept. And we all know that anything useful and practical did not come from a doctor.

Sunday, July 17, 2016

What Do You Want for Your Birthday, Anne?


Last night, when I took Motria out for her birthday at Hot House,  I was taken aback when she asked, "What do you want for your birthday, Anne?" My mind went blank.  We were, after all, celebrating her birthday not mine.

August 12th is a little under a month away, certainly, but I've been focusing on other things, like getting my G-tube removed for instance, and training new employees. I'm back at the market (Yay! You can't keep a good woman down!) and I'm preparing for an art show on August 18th.  

What did I want for my birthday?

The first thing that always springs to my mind whenever I'm asked this question is I want Rob and my mom back. Impossible, of course.

The second thing that popped into my head, although I didn't say it, was I want the world to be less violent and corrupt. I want the world leaders to focus more upon the environment, climate change, the protection of animals, and to respect the rights of people everywhere. Commerce, trade, and making money hand over fist should NOT BE THE TOP PRIORITY OVER EVERYTHING! (Capitalism - ugh!) I want humanity to step up to the plate and take responsibility for what we're doing to the planet and to each other.  I want reason and acceptance to be the norm not violence and hatred. I want people to please please PLEASE stop hating each other just because of differences in skin tone, sexuality, gender identity, or religious beliefs!

Can I have all of this for my birthday, tied up with a big red bow? Pretty please?

Sunday, July 3, 2016

Bloody G-Tube!


WARNING GRAPHIC CONTENT

Bloody G-Tube!  Literally.  When I changed the dressing this morning,  there was a bit of discharge (which is, unfortunately, typical) and some blood coming from the opening. And, as usual, redness around the opening from constant chafing. It was a lot more red today, though!

I took photos of everything to show both the visiting nurse and my family doctor, but I won't post them here because they look a little grotesque.

Excuse my venting, but I'm kind of fed up with the whole G-tube thing! I may smile and act bravely, but I have pain in my ribs constantly, and it gets worse when I paint, work on the computer, or if I even chat for a long-ish time.  Of course, I grin and bear the pain because I want to live my life the way I want!

However, there are things I just can't do because of the G-tube.  I can't do fine detail work on my paintings because I need to cross my arms over my torso and the G-tube is in the way. I can't sleep without sleeping pills because I sleep on the side where my G-tube is located. And, since I'm being "graphic" here, I can't even use my vibrator! Now that really sucks!!!

Do doctors think about such things or even care? No! Bastards! And, if they had put any thought into giving me this horrid procedure in the first place it might have occurred to them that this woman has Cerebral Palsy, a condition which makes her movements spastic, she might inadvertently whack herself where her G-tube is occasionally. I don't do it often but when I do it's so painful.

Doctors, generally speaking, are ableist shmucks who think people like me sit in one place all the time and don't have lives. Hell, they were amazed that I actually ate orally for 57 years!

They coerced and practically bullied me into getting the G-tube. If they don't remove it soon, I'm going to do the same thing to them. Remember the TV movie "Network" where the guy yelled out the window, "I'm mad as hell and I'm not going to take it anymore!"? That's me.


Tuesday, June 21, 2016

Waxing Poetic


For weeks now, I've been working on my Directive.  You know, making notes just in case I end back in the hospital again. (God help me, never again!)   I'm as healthy as a horsee now, but you just never know,  you know?  Terminal cancer,  a stroke, coma - I had to figure out what I actually wanted to happen in those kind of scenerios and write them down.

And then I began to think about the bigger picture, my last chapter.  What do I want then?

So I wrote this poem:

         Mortality

I've been thinking about mortality,
The cold hard fact of its reality.
It hurts my heart -
It hurts my spirit -
It hurts my head  -
To know that beneath the cold, hard ground will one day be my eternal bed.
I have Hamlet's doubts,
I ponder  of the theological ins and outs.
Is there an after party,
Or, forevermore, is this it?
More of the same,
More of the shit?
One thing I know,
Before I go,
I want laughter and love,
I want to watch the clouds gently roll by in the blue skies above
There should be music for my ears,
Nothing too sad,
Nothing to bring the fear of tears.
Delicious food to delight and tickle.
The taste buds will be a must!
No worldly matters,
No tragedies of the day will be discussed.
Well-formed men should dance,
Giving a small spark of romance.
As my final days begin to end,
I will yearn to have around me
My family and every close friend.
I want no tears to be shed,
Only laughter, joy, and wonderful memories instead.

Friday, June 17, 2016

SVU, Elephants, and Giving Advice to Olivia Benson

I had another weird dream last night and it's stayed with me all day long

In the dream, I was part of the SVU team, and we were all trying to figure out how why there were so many huge mass political demonstrations in this streets that featured random animals.  The first demonstration had a beautiful, noble-looking horse that led the way.  The second one had a pack of unruly dogs on leashes. And the last demonstration had a very unwilling elephant that kept depositing shit upon, the streets.

Throughout the dream, though, I was quite obsessed with SGT Olivia Benson's love life. Hér boyfriend was absolutely besotted with love for her, and she kept saying that she loved him the most but that she was in mourning for her former lover and didn't think she could become committed to anyone right then.

Like I said, I was obsessed with their relationship, and I began to weep and follow them around everywhere. At the end, I actually got into Oliviá's cot to wait for her.  I had to tell her that life was too short to wait for love, that she should grab it with both hands and never let it go.

Tuesday, June 7, 2016

Happiness is No G-tube!


Hi, everyone!

I just wanted to share some very good news with you all.

Today I went for a swallow test and it went sensationally well.  The long and the short of it is that the SLP specialist said that I could have the G-tube removed.  She'll call my doctor who will make arrangements to have the procedure done. I'll continue to eat very carefully, of course, and I'll see a dietician at Toronto Rehab who will advise me on which foods to eat in order to gain weight.

You have no idea how happy I am about all of this!!!!!!!!!  I've hated the constant pain of the G-tube and feeling confined to my apartment.

When the G-tube comes out, I'm going to have the biggest party you've ever seen!




Sunday, June 5, 2016

Guess What, Mom!

All week long I've had this nagging feeling like I had to call you and tell you about my news.

"Guess what, Mom," I'd say.  "I'm so happy because I just got a new portable feed pump! That means that I can actually leave the apartment whenever I want, go wherever I want!"

"Guess what, Mom! I'm going for my swallow test on Tuesday. I feel both excited and nervous about this. I hope they tell me that I can hear the G-tube removed.  I hate it so much!"

"You'll never guess who I met today, Mom!  I went with Barbara Collier as her guest to accept her award from the previous Lieutenant Governor of Ontario David Onley.  You know, the guy who used to be on CityTV News.  Yes, Mom, I know you prefer watching the news on CTV."




"Hey,  Mom!  I went to a demonstration today at Dundas Square to protest this terrible movie called Me Before You.  It's about this white, rich dude who recently was in an accident and became a quadriplegic.  He falls in love with his care giver and they get engaged, but he decides to end his life because he doesn't want to be a burden on her. Hollywood always wants to depict the lives of people with disabilities as worthless and too hard to bear, but, Mom, you always told me that I made life interesting and fun for you!"

Today, Mom, I really yearn to call you. Today is your birthday, and I want to wish you a happy birthday and tell you that I love you.

Happy birthday, Mom, wherever you are!  I love you and miss you so much!!!

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.