Patchwork Girl's Rambling Warps
Wednesday, July 16, 2014
      ( 3:09 PM ) Jessica  
A few people have asked me "why now?" The short answer is that I was not ready until a few months ago... I've known about cochlear implants since around 1990 and it seemed kind of weird to me. I had a friend who had one, but we didn't talk about it very much if at all... or rather, I don't remember talking to him about it..

In the spring of 2013, I went for a hearing test and the audiologist and the ENT both spoke to me about CIs... they said a hearing aid can't help me as much any more, not even the newer ones.  I was thinking "no WAY" but decided to at least go ahead and check it out and go for the cochlear implant evaluation. I went and although I was interested, what put me off was that the audiologist there basically told me to "forget about music"... first thing I did when I got home was to do an internet search for "cochlear implant music" and saw lots of links.

I have seen mixed reports from musicians about being able to enjoy music...

I decided that I would make a decision after getting the MRI to see if I can even get a cochlear implant. Well, I was supposed to get an MRI last summer, but that did not happen until December 2nd 2013. I joined a few CI facebook groups and yahoogroups and a few other forums and websites & read them passively.  All of a sudden, a couple of days before the MRI date (12/2), I had a major turnaround and decided that yes, I do want a CI... I didn't feel like I had a whole lot to lose and as far as the music issue, I would work at it. Overall, once someone gets a CI, it takes work to train the brain & I am willing to do that... my music hearing history (piano lessons from 7 through teens, flute in high school, music in general) tells ME that I have a good chance to be able to hear music at least okay with the CI. I hope to be able to play music again, but the best thing will be to be able to just enjoy when others play, recordings, etc. From the links that I sent in the last blog entry, I think that some of it may have something to do with programming.

That said, I plan to keep my expectations low... to the point of being more interested in the 1 week post op checkup rather than the activation day. I'm guessing that hearing all these sounds, some which I haven't heard since I was 2, may be confusing... there will be beginner programs to help me get used to the implants.

I have a memory of when I put my right hearing aid back on after not wearing it for a long time. The sounds I heard in that ear were disturbing...some of them (busses passing in NYC) made me dizzy. I regret not continuing to work on re-learning to use the right side, but I can't go back, so I won't worry about it... maybe someday I'll get a CI on that side, but let's first get the CI on the left side, my dominant ear...


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Saturday, July 12, 2014
      ( 2:04 PM ) Jessica  
This past week, I completed my Phase 2 cochlear implant evaluations.  We stayed in Dallas (at a motel 6 near the hospital) to avoid the need to drive back and forth. We got together with my sister on Tuesday, had dinner at a Cajun place...

 The first one, on Tuesday 7/8, was with the audio verbal therapist and she gave us an idea what to expect, and wants the expectations to be on the LOW side so that we aren't disappointed.  I'm working on that, though I do have hopes that I won't lose my ability to hear music.. even if it takes time to re-learn how to listen to it and adjust the processor, etc., etc..
I already knew that I would not come out of surgery OR activation with restored hearing and I KNOW that there will be a fair bit of work to be done, and that it may take a few months before I can make sense out of the sounds coming into the processor... hopefully knowing what to expect will be helpful... and knowing to just RELAX and stop trying every so often... just sit and listen passively & foctus on non-audio stuff for a while with the external parts on...

Wednesday morning was the balance test. That was interesting. I had to wear these weird eye goggles with the left eye covered... first I had to follow squares with my eyes... then I had to count in different fashions while having cool air blown into each ear and then warm air.. counted backwards, counted by 2s... and 2s backwards... the afternoon visit was with the neuropsychologist and we talked about a lot of things related to getting a cochlear implant. At the end, I told her about my evaluation last year at UTSW and she said she was not familiar with the doctor or audiologist from there & she said that Dr Peters is very careful and thorough, and that he would not have sent me to see her unless he felt that he could help me... that is awesome.

I should have a surgery date as soon as my surgeon reviews the reports from the various evaluations...

I've been reading some/watching some and here are some links that I think would be good for everyone curious about and considering cochlear implants. If you have any recommendations, *please* send them to me! :

Sound and Fury Part 1
Sound and Fury 6 years later
The Heather World (This is a talk that Heather Artinian gives at her college. She is in Sound and Fury.)

I'm not sure if the above links have captions on various tablets & smart phones, I will check my tablet and see if they do or not and will add those links. On computers, you can turn the captions on and off.

http://www.washington.edu/news/2013/10/09/new-strategy-lets-cochlear-implant-users-hear-music/ Music!
http://archive.wired.com/wired/archive/13.11/bolero.html article about hearing Ravel's Bolero with a Ci
http://cochlearimplantonline.com/site/ Cochlear Implant Online
http://www.c-a-network.com/index.php Cochlear Implant Awareness network

Facebook Groups:

https://www.facebook.com/groups/ciexperiences/ Cochlear Implant Experiences
https://www.facebook.com/groups/10581738294/ Cochlear Awareness Networks
https://www.facebook.com/groups/153601038015605/ Cochlear Implant Users
https://www.facebook.com/groups/349059495171094/ Advanced Bionics
https://www.facebook.com/Cochlear?ref=br_rs Cochlear Americas
https://www.facebook.com/groups/MedEldiscussion/ Med El


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Tuesday, March 25, 2014
      ( 7:37 PM ) Jessica  
This morning, I mailed my tapestry to the ATA Untitled/Unjuried small format show in Rhode Island:


I think it is 9" by 7.5" but I forget to double check the measurements before mailing.. 

There is an awesome YouTube video of a past show here, enjoy!:


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Wednesday, December 04, 2013
      ( 12:53 PM ) Jessica  
I had the MRI today to see the condition of my cochlea (it is fine) and found the MRI experience pretty interesting and fun. The worst part of it was the needle for the IV that they needed to put dye in and even that wasn't that bad.. just queasy-making. I don't like needles unless they're knitting needles, tapestry/needlepoint/embroidery needles, etc... you get the idea.. as long as they don't poke me, I like them!

I got there, had to do some paperwork and then was taken to a room to change. Then brought me to the MRI machine, I asked a couple of questions, one of which was whether or not I would have any opportunity to move or have a little cough. The technician said I could when the machine went quiet... in between tests. The quiet periods were usually VERY brief.

I guess I'm not claustrophobic because I actually enjoyed being in the MRI machine.... I guess it also helped that they gave me a panic button and also there was a little window to look out of.
Through that window, I could see outside & I counted cars for a little while. I lost count around 40 and focused on other things. I did not want to fall asleep because I wanted to make sure I didn't move. I can't promise stillness if I'm asleep! I watched the images on the inside of my eyelids some of the time (maybe I should do that with a sketchbook in hand for some interesting abstract art!) and in general enjoyed the different vibrations the machine made. One of them was almost like some kind of rock concert & almost made me laugh & want to dance, hahaha... that test shook the machine a little bit!

Overall, I found that all my anxiety about the MRI was unfounded for me... but when I think about it, crowds can be somewhat problematic: when I was at a halloween parade or whatever it was in NYC several years ago, I got pretty uncomfortable about not being able to get out of the crowds easily. That was scary...

After the MRI, we went to see the doctor. He said things look good and recommends doing my left ear, as I still get a fair bit of use out of it.  I suppose that I will get an ear mold for the right ear & start learning how to use that ear again. I don't know if I ever got much use out of it, which is odd since that ear isn't "as deaf" as my left ear. It's like being right or left handed, I guess.

Figure it'll take 2 or 3 months before I can have the surgery as they need to arrange things with insurance.  Meanwhile, I can use the time for research research research! I've joined a couple of facebook groups and a couple of online forums. Every time I read something that someone wrote about their implant brand, I think I want to get that one... from what I'm hearing, they are all good, I just need to learn about the features of the 3 brands and also meet people who have them and see what they are like.

When I told my oldest son that I'm planning on getting a CI, he said I will be a cyborg. Haha.. fun! "My mother, the Cyborg!"

If anyone is interested in what I'm up to creativity-wise, check out my other blog: Patchwork Girl, Tapestry Weaver and Sometimes Painter!

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Sunday, December 01, 2013
      ( 11:30 PM ) Jessica  
Back in June, I went for an evaluation to see about getting a cochlear implant (CI from now on).... fast forward almost 6 months: tomorrow I go in for an MRI to check the condition of my cochlea or whatever they need to do the MRI for. Then I'll have a meeting with the doctor a couple of hours later. I'll be taking a sedative when I get there... since Gary has to work, I'll be spending the day in Dallas or maybe Denton or both..hopefully the sedative will have mostly worn off by the time I get to the doctor's office.

I've read a few blogs, I've looked at the literature that the audiologist at Southwestern gave me for Cochlear, Advanced Bionics and Med El. I really hope that when I see the doctor tomorrow, I won't have to tell him which company I want to go with because I don't know yet... but I will ask which they do the surgery for the most, etc... see if I can get a feeling for which company they find to be most successful.

IF the MRI goes well and I'm able to have the surgery, (yes, I'm being careful with expectations), but from what I'm reading, the success of the process depends on how much effort I put into the process.

Important considerations to me are: being able to follow conversations better and to be able to hear music better than I can now and maybe play music again.

It would be nice to be able to talk on the phone sometimes. I think the last time I tried, we were in Wichita Falls and I had a few errands to run while the others were doing something else. When they were done, they went to a restaurant and I tried to call them to find out WHICH restaurant and WHERE it was because for some reason text messages were not getting through, so I had to call... I finally had to snag a stranger on the street for help. Right around the time that I got over to the restaurant, I got all of the backed up messages. Arrrgh!

The last time I tried using the relay on the phone, the relay operator was very impatient..  I don't text anywhere NEAR as fast as I type, and one or two times I had to explain that I text slowly, blah blah blah... too frustrating. I suppose I could have used voice carryover... hmm. The last time I did that was when I was in the hospital when my twins were born...

If I still need to lipread, that is fine: I'd just like to be able to lipread AND hear the speaker without a hearing aid squealing its ass off and annoying everyone in the room... turning my hearing aid helps me with some people, but the darned squealing...

I'd like to (eventually, once I get past the chipmunk or mickey mouse or other odd initial sounds) know what people's voices sound like... and it would be NICE to hear my youngest son's voice before it starts to crack! <grin> (Maybe I should make everyone do some recordings, huh?) It would be nice to be able to actually hear the cats meowing... one of our cats apparently has a very quiet or maybe even silent meow. I'd like to know that for myself since when he does meow, it looks like he's yelling because he opens his mouth so big!

I'm gonna stop writing for now so I can go read some more CI blogs and find some links that compare the 3 companies that make CI equipment. The literature that was given to me back in June is mostly "pick me! pick ME! I'm the best!" I hate that type of advertising... oh well.

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Thursday, August 22, 2013
      ( 5:48 PM ) Jessica  
I've been hard of hearing since I was around 2-1/2 years old and for a long time, my hearing aids have helped me... recently I got my hearing tested & was recommended to go for a cochlear implant evaluation. I went & from what I've heard, i'm not convinced that it would help me enough... the audiologist at the place I went to implied that I can forget about hearing music better...

But wait a minute. All 3 of the info packets from the cochlear implant companies BOAST of how implants can help with music enjoyment... they show people holding ipods or/and mp3 players & one photo shows someone holding a guitar. But wait for this: there are 2 people in the photo & it's not clear which one has a cochlear implant (or both? or neither?) so no idea whether or not a CI can help with music.

The literature just overdoes it on the "pick me, we're the bessssssssssst!!" bit!! 

I love music and have CLEAR memories of being able to hear the music from the commercials. 7 up the uncola... Joe Namath's shaving cream "take it off take it ALL off" (but really looks like "hoff" if one can see the "h" sound on the mouth!) and various theme songs from tv shoes, etc., etc... my life was full of sound & music & my parents played a lot of music... the opera was awful, but I digress...


Overall, she got me wondering, why even think about an implant if it's as bad as she says it is? It seems like I'm getting the total opposite info from the audiologist than from the CI literature from AB, Med El & Cochlear... I know it takes work & if I could have some idea that it would work for me, I would be glad to do the work.


Right around the time of the evaluation, I also got a new phone. I hated the damned thing at first.. HATED it... but made up my mind that I was going to get used to it and would just find other ways to deal with the fact that the email app on my phone SUCKS and I got used to the keypad & just kept telling myself that this would pass once I got used to it. Well, guess what? I did get used to it & got over the few times I was considering trading phones with my youngest & using my old phone (which I can't get any more & have NO clue how long it will be before the charger outlet gives up the ghost & I can't charge the battery on it... neither phone is a smart phone but my phone is smart enough for me: I can read stuff in QIOO format and read news, etc., etc... the key point is: I GOT USED TO IT!! (That said, I recently found out about a new company that I think uses AT&T towers & doesn't charge an ear & an eyetooth... I may switch to it, but I'm still leery of going to Android because of all the security issues... so we'll see.

I know a CI would take work in making it work well... I know the first few weeks of recovering from the surgery would be difficult... I also need to make sure that I either have friends or/and family who could help me through the initial hard parts...


SO if you're reading this & you have a cochlear implant, I'd love to hear from you or see a link to what you've written about your implant experience.
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Sunday, August 04, 2013
      ( 4:50 PM ) Jessica  
I've been thinking about getting another string instrument, preferably light weight: guitar, ukulele or similar... this wasn't one of those "shop around" things It was there, I likes it, I buys it and probably will keeps it.

Yesterday after knitting group, I picked up an old mandolin... no label except for "Jara" on top made on one of those label makers: I'm guessing it is a previous owner's name, NOT the brand name for the instrument.

It has a sweet (to me) sound, and I am able to hear it with my hearing aid turned up to around the middle... it has 8 steel strings. I'm waiting to be approved over at the mandolin forum so that I can post photos for possible identification. I'm going by the philosophy "it isn't a bargain if you can't play it"... a new set of strings & some tutorials/book on how to play or similar & voila...and I'll give it a little clean up and may even play around with painting on it.

Here's a photo:



If anyone knows anything about it, let me know! I'll post it on the Mandolin Cafe Forum once I get my membership approved... crappy phone photo, please excuse!

The work on the Beauty & the Beast shawl continues... I've promised a friend to take a picture of it on the needles when it reaches 1,000 stitches! <grin>  That'll be a little more than 1/2 way up, close to 2/3 of the way up...

Now for a photo of our newest Beauty:



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Wednesday, July 31, 2013
      ( 11:54 AM ) Jessica  
Today is a special day:

My oldest sister's birthday! Happy Birthday, Carol!!

I did my first blog post here in 2002.  It is no longer on the blog...

It's Harry Potter's birthday, as well as his creator, J.K. Rowling... happy birthday to them!

That said, I'm still not sure about regenerating this blog: I may go back to one of the ones on my website:  

my older blog

my not-so-older blog 

Regarding my older blog entries: I have chosen to leave them even though I no longer have any of the photos & some of the links are dead.  My oldest 2 are now 18 and my youngest is 12.  My youngest is a talented juggler & is learning how to ride a unicycle, which he got in June this year! 

I have another blog on blogspot that I post on every so often, called Patchwork Girl Paints 
Again, the disclaimer: I'll post when I feel like it. Right now, since I'm busy working on a knitting project, I don't have time to paint, but i'll get back to it soon!



Current project/obsession:

I'm working on a test knit of the Beauty Shawl, designed by Gina House. Hopefully her book (including this wonderful pattern) will be available in about a month. I will post more information when I have it.

This is the Ravelry link to the project I'm working on. 

And here are some photos of it:








They're not the greatest photos as my phone's camera doesn't do detail well at all.  The shawl has beads that I added & is done in Jaggerspun Zephyr lace.  If anyone wants to try this yarn, contact me 

Animals

We currently have 8 cats & 3 dogs...  our oldest cat is 13 and is pretty healthy & spunky. She's a little on the thin side, but I have been supplementing her diet with satin balls (satan balls? LOL) which she eats VERY defensively.  Our youngest cat is shown in the photo with the shawl, we don't have an official name for her but the current running name is Baby Portabella Mushroom, but I don't think it will stick. My middle child found her when he was hanging out with some friends last week... 

Nuffernow! More when I feel like posting again! Please comment, I love to hear from folks!


 
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Saturday, July 09, 2005
      ( 1:05 PM ) Jessica  

Patchwork Girl's Rambling Warps has moved!

The new location is http://weavingrainbow.com/blog Be sure to update your bookmarks & visit often!

I also have another blog for homeschooling/unschooling:

http://weavingrainbow.com/HSblog

C'mon over!

And don't be

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Thursday, July 31, 2003
      ( 2:25 PM ) Jessica  
This time last year I discovered blogs & shortly after, I decided I wanted to start my own blog & discovered blogspot. For a short while, my blog was on the tornadowood.com website, but we had a crash in February, I moved my blog back to blogspot "temporarily" and just recently started putting together a new blog on tornadowood. I had hoped it would be ready today, but it's not, so I'll just keep mirroring the posts so that the transition will be fairly smooth. I'm hoping to have some photo galleries of WIPs & FOs & knitalongs linked from the blog... I will have the usual links to the weblog rings (Fiber Arts Bloggers, Knitting & Mommies), Knitting Meetup & my tag-board and a couple of other favorite links. I THOUGHT about posting links to my "favorite" blogs, but have not decided what to do about that since sometimes there could be hurt feelings about it...what I will probably do instead is link exchanges. That will eliminate the risk of hurt feelings & other political nonsense. Also, if i mention something on someone else's blog, I'll post the link... none of this "favorite" stuff for me! A little history: I've been knitting since I was very young, around 6: I pestered my mom to teach me until she finally relented & cast on some yarn onto 2 pencils & I went from there learning to cast on & purl. I was never much of a compulsive knitter, but I had my moments & sometimes I took my knitting to school...somewhere I have a scarf that I made in a beige yarn with combinations of knits & purls to make diamond shapes & other random designs...that was NOT a curly scarf! I eventually learned to do needlepoint: anyone ever notice what copycats kids are? My mom took up needlepoint with a vengence & somewhere I have some of her framed pieces since she did some pieces for a friend who was doing a book on needlepoint. I do not remember the woman's name or the name of the book & my mom is not around to tell me... Susan something, I think. Helpful, huh? Before my mom died, I picked up her needlepoint UFO of Unicorn in the Garden... I got a fair bit done & after she died, it helped me feel close to her. I never finished this since it was stolen from a friend's car a long time ago... I did get another, but never got much done on it either and at this moment, I don't know where it is... in the late 80s/early 90s I discovered long point needlepoint & did a little of that, never finished... this brings me to something my mom always told me: finish what you start... ahem... after she died I found MANY UFOs of hers... probably "do what I say, not what I do"... since then I've learned to finish my projects... In the early 90s, I got interested in spinning & weaving & then a year ago I got back into knitting...which leads us to my blog history: At first, my blog was NOT a knitting blog, it was a general fiber blog with an emphasis on weaving... I still weave, but mostly knit nowadays, it's much easier to knit while watching TV or carrying on a conversation since I don't have to look at my knitting...weaving requires looking at what I'm doing & since I'm deaf & I read lips, I don't get much weaving done when others want to talk! I started knitting again when people were flashing their socks around on different blogs... I tried doing a pair of cabled socks for my youngest son & never finished them because they would never fit him.... and I finished another pair of socks that I had started in 1999 & also finished a sweater that reuven may be able to wear this winter (if he can get his head through it...I may re-do the neck, I don't know!) and I've done a few other things, which you'll be able to find in my archives on the new blog... or possibly on the archives on this blogspot blog if they're working... I'm thankful for the people I've "met" through this blog & hope to meet some of you in person some day... I've learned a lot from you & had fun with the knit along for the Smooch tank (which evolved into a top with sleeves & mine is almost done)...and for the focus that the blog has given me on my projects. That brings us up to date... hopefully I'll be posting a little more often since tomorrow is the last day of swimming lessons & I don't think we're going to be going to the next session since school starts 3 days before the next session ends... plus I only budgeted for 2 sessions of swimming lessons for the twins & one for the younger 2. We'll keep going swimming "just for fun" a few times a week until the pool closes... One more thing: I found out 2 days ago that I've lost at least 20 pounds so far... gotta do a little shopping since my smaller pants don't fit yet (BUT THEY WILL!!) & the ones I have now are too loose...
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Welcome to Patchwork Girl's Rambling Warps blog... where I talk about just about anything from projects to just stuff to rants and whatever... I started blogging here on July 31st, 2002 and have been blogging on my website with Movable Type. I do not promise to blog regularly! I will blog when I feel like:

Blogging Without Obligation:

Feel free to leave comments!



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