Cranky, crotchety, crabby...

Cranky, crotchety, crabby...

I'm just feeling plain and simple ... Cranky, crotchety, crabby.

Bless hubby's heart. He moved the TV from the living room to the bedroom so I could lay in bed and not be bored out of my mind. We're watching Richard Pryor oldies.

"Car Wash" - watching that & typing this entry.

I'll be honest as this past week has been quite tough on me emotionally. I have to tell myself in my mind to try not to use my emotions to make my decisions. To use my mind to make decisions logically and make decisions wisely, not emotionally.

I am appreciative that I had my intervenor with me, she is what I call my good friend now. Dawn intervened for me at the doctor's appointment and I'm able to fully communicate with the doctor now with no apprehensions.

The doctor agreed with me that my anxiety medication needed to be increased the double dosage. Effexor had been working then my vision diminished and my anxiety had been worsening because I would only go out with people I trusted. People like my husband, Chris, Dawn and other people that I communicated my boundaries/limitations with.

Those circle of people, I would say are quite small... unfortunately not even my immediate family realises how bad my anxiety is. This past Christmas I was not able to be really involved with the conversations and relied on Chris to tactile for me/keep me involved in ASL conversations.

This was what sent me for a downfall because in a way I don't think I was emotionally prepared for it. I was logically prepared, yes, emotionally prepared. I honestly don't think anyone is ever prepared for their own family's disconnection.

The disconnection is never intentional.. it just is.

Usually it takes families the longest time to reconnect as a new unit because communicating is a whole new ballgame.

Yeah, that'd explain why I'm really cranky, crotchety, crabby today....it feels better typing this out.

I know I'm not the only one who experiences this "alienation".

Tactile smile and 90 Love!
Patty oxox

Personal goals and aspirations for 2009

Hello beautiful people!

I'm terribly sorry for being so tardy with my own blog, you see.. I just have no excuse at all! I'm hopelessly hooked on Facebook and in love with this beautiful thing called "reconnecting".

My goodness, reconnecting with old and new friends just brings back wonderful memories for me. The year 2008 practically flew by and now 2009 has arrived.

Facebook brought a lot of friendships closer and for me, I am appreciative because I was able to meet a lot of wonderful people through this place.

Children I babysat for has now grown up & have children of their own as well. Wow, I tell you this. I feel old. Little children I recall fondly would terrorise the living hell out of me now have moved on to graduate and become doctors, photographers, journalists, computer graphic artists and best of all... parents.

It warms my heart to look into their profiles and their pictures of them with their children. The wee children I look at in the pictures I have to remind myself are the offspring of the children I babysat. They just emulate their parents AND their grandparents so much!

Personal goals and aspirations for 2009.. normally I don't do goals such as losing 50 lbs for 2009 or go on a world-wide cruise trip or so on. I set realistic small goals for myself to accomplish because losing my vision has taught myself to aspire for goals I have always wanted but never set myself to reach for.

I aspired for a support group for DeafBlind people that had no requirements or certain set of expectations such as "Usher's Syndrome". I wanted a support group for both Deaf and DeafBlind to socialise together. 90 Love was built on this common ground for both Deaf and DeafBlind to support each other.

Another personal aspiration for myself was to do more DeafBlind advocacy. Through DeafBlind advocacy I can reach out for more need into Literacy Empowerment.

I grew up with a profound love of literacy. Reading and writing was my escape. My escape from almost everything. Literacy Empowerment I personally believe so many Deaf people can have a beautiful influence in this field.

With both ASL and English, I would love for both DeafBlind and Deaf people to share their life experiences through Literacy Empowerment.

Tactile love to all,
Patty OXOX

The beautiful power of v/blogging!

The medium nowadays is v/blogging and the power behind it is just so resounding. I want to spotlight this entry on an amazing DB advocate, a beautiful human being, someone who really cares for humanity and travels all over the world.

Miss Coco, known to all as Tactile The World, YouTube'stactiletheworld and to ours (hers and mine) DB family, Miss Coco Chanel.

She's something I tell you. I have never been so moved, inspired, in awe of something beautiful like I was last night. I cannot lie, fib or embellish. Yes, I stood besides the elevator in the Royal Cheshire Apartments Social Room as the OUSA Christmas social was held.

Lord help me, I know I was blocking the elevator access but I wanted first access to Coco all to myself!! As soon as I felt the air pressure change on my right, I knew the elevator door opened, I looked to my right and there she was!

Misty Kehler brought Coco in and I just beelined right to her, well... more like jumped right in Coco's arms!

I properly introduced myself and Coco introduced Misty to me "This is Misty.." and I ended her sentence as " ... Kehler." Coco was surprised and I signed "I remember Misty Kehler from either Xanga or Wordpress.. one of your blogs. Blogging is so powerful!"

If I can recall.. Misty replied "Yes, wow.. so powerful!" Coco and Misty bid their adieus.

Back to the point of this entry, after a great evening with Miss Coco, I arrived at a realisation. I actually had inspired other people at the CNIB's Christmas social. I admit I was bashful and shy at the comments when others came forward to me and exclaimed to me "You wrote all those words in your blog?!"

I'd reply "Yup, I love blogging, great way to express my feelings." Others would say "Wow, you express with those words!"

Now that I think back about it, a few people at last week's CNIB Christmas party were inspired by my blog. I mentioned to them that I am constantly inspired by everyday people doing everyday actions. Those people inspire me.

My DeafBlind family inspire me with their determination to live life fully. Miss Coco inspires me to advocate for equal rights between DB and sighted/hearing people.

This is how beautiful this medium is, the strong power this is. The tsunami effect within the communities. To call it a ripple effect would not do the beauty of the hard work justification but to call it a tsunami effect absolutely perfects it.

Just for you my dear Miss Coco, Namaste.
90 love
Patty oXoX

I did a very terrible thing..

I really wish I would learn more about patience.

I did a terrible thing to my husband and I feel awful about it. You see, DH has the best intentions at heart.. always. At the heat of the moment, I know I can bite his head off with a scowl, a snap or a bark.

This time, I did the worst. I yelled at him and hollered "WHAT?!" way before he even was going to say or get my attention. I don't like it, I don't even like me or myself now. I don't like what I see in the mirror. It's ugly.

I can't wait for DH to come home from the store as I need to apologise to him.

The real meaning of patience

Patience- "pay-shunce" as pronounced by me. I "Wiki'ed" up the meaning if patience and got this,

Patience (ˈpā-shənz) is the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without becoming annoyed or upset; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties. It is also used to refer to the character trait of being steadfast.

Sometimes I wonder if my patience is being tested these days. My husband, bless his heart, I know I test his patience when I'm whining or being cranky. Chris, what a real gentleman, he listens and encourages me to think positive.

If you recall the last entry, I went through quite a challenging visit at the hospital as I didn't have an intervenor to interpret for me. Chris was able to interpret for me in between us using the pen and paper with the on-call emergency neuro-ophthalmologist at the E.R.



Today I got an email from the ophthalmologist's secretary as the ophthalmologist was away on holidays but wanted to know how I was doing and how everything was going. It is nice to know that the doctors do care about how things are progressing.

I do have an appointment to go to London, ON to see another neuro-ophthalmologist as the visual fields test I had was drastically different than the one I had less than a year ago.

This does teach me a lot about patience. Movies with subtitles are much more appreciated than movies with Closed Captioning because subtitles are much more easier to read than Closed Captioning.

I love my quality time with Chris and our furkids. When we all sit and relax, this is when I do really unwind. We have a standard bed and it is really small for all 4 of us. We all want a king sized bed and this would be amazing for all of us. We could live in our bedroom!

I'm staying here but my eyes and mind's going places!

It's been an overwhelming week safe to say. I've been staying put but my mind & eyes have been going places without my permission and I'm not a happy camper about this.

Trying to deal with a constantly racing mind and diminishing vision is something for me to learn about myself and my patience. I can appreciate how I can tolerate how much I can go as far as I can without showing my frustrations. It's hard, believe me.

Wednesday, I went for my ophthalmologist appointment at 2 pm and I thought it was routine. Check my vision using the Visual Fields test and a couple of simple tests with the student teachers and off I was on my way. Nope, it was totally opposite. Since I failed the visual fields test, my left eye compared to the last test I had, it shows rapid progression of my failing eyesight.

The doctors tried a newer prescription that I was going to have filled but decided to wait out because with my history of diminishing eyesight, I elected to wait. It turned out my decision to wait was best. The newer prescription didn't work for me.

I explained to the ophthalmologist that for the left eye,6 months ago it was like looking through sheer drapery, right now, it is like looking through silk drapery. Just so hard to try to make out who is who. Faces I cannot do, shapes I can if they are white shapes.

The ophthalmologist jotted down on paper with such seriousness on his face, "I am very worried about the high intracranial pressure. We must send you to the hospital for more testings now."

I was puzzled because I normally have an intervenor from the CNIB with me at my appointments. My regular one is on her honeymoon and the substitute replaced her called in sick & tried hard to find a replacement but to no avail. I went ahead without no intervenor.

Hubby and I arrived at St. Mary's Hospital around 4:30 pm. A battery of tests and by 10:30 pm, the doctor wanted to transfer me to another hospital for an MRI. I was way past physically exhausted and now to the point of being emotionally exhausted.

I was praying and hoping to be released first before I was transferred to another hospital because I needed to really sleep in my own bed and get a lot of rest as well. I was medicated already with Ativan and a strong narcotic that just knocked the senses out of me.

Hubby and I got home after 11:30 pm and I just wanted to crawl into bed but before we did, he made us something light to eat so I could have something in my tummy.

I slept until 10 am and was exhausted. The hospital called and informed I had an MRI appointment at the other hospital so I had to phone CNIB to make sure I had an intervenor for this appointment. Safe to say, I slept the whole day and night away.

Today, my CNIB intervenor arrived and drove me to the other hospital for the MRI. I was just still tired, groggy-feeling as well. At the hospital, I had to fill out forms, make sure that I was aware of the MRI machine, I informed the technician that I was going to take Ativan because I'm terribly claustrophobic of small enclosures.

The MRI, is a small and tight enclosure for me to be inside!! Ativan and an injection dye into the IV , 45 minutes long, pretty much I just slept inside the MRI enclosure. Today is just an odd feeling of not being present with the surroundings.

Today is Mosey's Happy Gotcha Day and we went to Bark and Fitz to get him presents. I just wasn't feeling well so Chris did most of the things for me. Bless my family! I don't know what I could have done without my husband and our two furkids!

Hubby did a wonderful thing for me to show how my vision is. Before I used to see (both eyes) it used to be like looking through two toilet paper rolls. Now for me, my left eye has no vision. The right eye is so limited. It is like looking at one toilet paper roll right in the middle of the face.




With this setback and all the hospital testings/visits, I hope there's nothing serious with the high intracranial pressure. All I do know from the ophthalmologists, the optometrists and the doctors I saw in the few days, I have been told to take it easy. I am due to go back to London, ON for the Ivey Eye Institute because this is a very serious concern.

Hugs to you all my dear friends. I have been checking you all on your blogs.

Tactile smile,
Patty oxox

O'Canada!

You Are Canada

You are a very tolerant person. You appreciate diversity and consider yourself a multiculturalist. You are also very community oriented. You think it's important to help those around you have a better life. You're uniquely you. You have been able to resist bad influences and stay true to yourself. You are usually confident in who you are, but occasionally you have a little inferiority complex.

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