This is Maria, Julia's (lj user "mornhyland") wife.

Julia took her own life midday on Wednesday, April 23rd.

I will be leaving her journal up, just the way she left it.

During this sad and bewildering time, I hope you will find some comfort in remembering the wonderful things that made Julia so beloved by so many. Thank you for reading her LiveJournal, it meant a lot to Julia.

With great sadness,

Maria

Apparently the medications they were to give me to knock me out and help with the pain during the procedure today did not work. Not only did I not go to sleep, I was wide awake and in incredible pain. Something about the scope getting caught in a loop as they searched around.

After all of that, it turns out to be fairly normal and the diagnosis is IBS. I have a new medication to try, Amitiza. But, I think it is for the wrong kind. I have problems with both constipation and diarrhea, but more the diarrhea as of late (but this changes depending on when we are talking about). The problems that are constant are cramping, bloating, and nausea.

Well, I'll give it a shot and see what happens. I lost 10 lbs with the "cleaning out" before the procedure today. Now if only it could stay off.

flutefly wrote this Childish or just human earlier tonight. It is in response to a conversation we had earlier today. I said more than I should I have, getting frustrated can cause you betray more of what others have said than you wish to. Feeling hurt and alone can cause you to just repeat things that were said without thinking of the consequences. Sadly, time moves but one direction.

If only wanting to make things right was just enough. If only this process didn't hurt so much.

I never got around to writing up what we did in mobility training on Tuesday and I wanted to really write up what today was like.

Tuesday was a review of the Sighted Guide method, and some more work on going through doors. And then we went over to work on some technique with the cane. Originally the first thing I was shown was just a cross body way of holding it so that there was no motion. On Tuesday we started with introducing a back and forth motion. That in and of itself is not that hard, though he said that sometimes it can be hard to for new users to keep the can arc within a shoulders width (the goal). If anything I'm overly cautious of going outside of that distance and don't move the cane far enough back and forth, but have been getting better. The more difficult piece is the rythmn of walking with the cane properly. The idea being that the can is moving away from the foot that is moving forward. This takes some time to process as there is a lot going on (at least for me). Making sure that you have the cane held properly and and your wrist in the right position, the can moving back and forth properly and then you have to walk. I was doing ok by the time we went back inside Tuesday.

Today we once again did some Sighted guide review and then back to the cane technique. Reviewing what we did last time and then adding in Contacting an object. After working on getting that properly, without a blindfold then I was to do it blindfolded. The "object" that I was contacting was the wall of a building, we were on a playground. What turned out the be the hardest part under the blindfold was that once I started at the wall and waled away from it and needed to turn around to walk back towards it to do the contact, making that 180 degree turn was difficult. Heck, at first even walking out straight from the wall was a little screwy. But, he showed me how to square myself with the wall so as to walk more straight away from it. Then using the way the sun felt make a better estimation of that 180 degree turn.

Today I also had on my hearing aids for mobility training, not sure if that was the best idea, but I did. It was kind of neat during the Sighted Guide review, except that I got a bit distracted by the sounds and missed some of the cues that something was happening (new inputs can be overpowering). But, then when we did the blindfolded work with the cane and the additional strain of the sound of the hearing aids it drained me pretty good. I was exhausted at the end of it. It was hard to focus and sort out all the things that were happening. I didn't have to think about the cane movement so much any more, but trying to walk with the cane with *NO* visual cues and all of the noise that I can't sort out so well (still working on getting some sort of directionality feel to the hearing aids).

I tried to explain to the instructor that the hearing aids are not a fix it to everything. I still can't follow what he is saying when I am blindfolded, though I get I catch words here and there. And even if speech was not an issue, I can't wear them when it is raining and this is Portland. There are other reasons for NOT wearing hearing aids, some of which are personal and simply choosing to not wear them that day or whatever. Sometimes you need a break.

I tried calling a local hearing aid shop, the one that I was told would be most likely to have the type of thing I was looking for in stock and not need to order it. You would think a place that sells hearing aids and assistive devices for deaf/hoh people would be receptive to a relay call. What follows shows that this isn't always the case. I was really amazed at how rude he was to the operator, and then he apparently refused to answer the calls I tried to place calling back later via relay. And the message I left was never returned.

This really upset me. I actually started crying over this call. Which seems silly, someone hug up on me, come on, grow up. But, a friend tried to help me understand that this person did more than hang up on me. I started off the conversation appologizing for not being able to use the regular phone with the t-coil, something I shouldn't have to do is defend why I'm calling via relay, with hearing aids or not. I was excited about the idea of this thing I wanted, and when he hung up it was a denial of what I was trying to do. I was crushed, and someone else validated that I had a reason to feel that way.

My question is this. If a hearing customer called and simply asked the person to slow down would they have hung up? And without even a proper ending to the conversation. Would they refuse to even answer that persons calls when they tried to call back?

503 774 3668
RINGING 1...
(M)
(INTRO CALL PLS HLD)
Hearing Resources. this is Jay. (EXPLAINING RELAY) GA

Good morning, this is Julia Case calling, I just recently got my hearing aids and I'm still not used to using the t-coil. I am calling to see if you have a product for using the hearing aids with a cdplayer or ipod Ga.

you can use a neck loop or you can use a silhouette induction coil. in either case,
(to operator: my god, can you put up with what I'm saying Q)
(CALLED PARTY HAS HUNG UP)
(ANOTHER CALL Q GA)

what was that qq

(i was asking the man to speak slowly but I guess, he was not up to it GA)

please call back Ga.

(thank you, redialing)
RINGING 1...

Tiring... Need to do it slow... It's not like I was born deaf or anything, but going from where I was to this is a BIG change. My one friend suggested and I did a little of it today, just playing some music on the computer in the quiet room while wearing the hearing aids for a little while. I can hear the music, but not make out the lyrics. I spent some time wearing them while having conversations, this is REALLY tiring (you'd think it would be less so, but maybe that is one of those until I get used to it things). Still am asking people to repeat things if they aren't providing enough other cues for the conversation. But, I catch things I would have misted before.

The ear molds make my ears a little sore if I wear them for too long right now, I thought at one point I would just use the MUTE program and leave the hearing aids in to get used to wearing them, but my ears got a little sore.

I think some sounds get amplified more, but I really don't understand it to be honest. Sitting in the QRC, all of a sudden I was like, "What in the world is sound!?!?", and someone said it was the heat or something. It was a very low hum, but constant. And then they looked at me very odd, and asked if that was the first time I had heard it. And it was and it is annoying.

Someone scared me on the walk home tonight from class. They walked up from behind to my side and said "Hi", I caught that, but wasn't expecting it. Please don't do that!!!!! I think they realized they startled me and said something about being walking the same way... I turned off at the point to go into my building. I'm pretty sure they were trying to be polite, but it made me feel very creepy.

Will post in seperate entry about horrible relay call trying to get a neckloop to use with hearing aids.

They will take getting used to, that is for sure. It reminds me of when I was a kid and all that wax built up in my ears and no one noticed for a REALLY long time and then they cleaned it out. When we went outside onto the streat the sound was like all in my face. The street feels the same way today. I was ok in the audiologists office, but then when I got out into the street it was a bit overwhelming, even with the aids put onto the high noise setting. She asked me to keep a log of how things go, what works what doesn't work. When I an hear people, when I can't. When sounds are too soft, when they are too loud. And the programs can be tweaked. Right now I think the prblem is that I've been living with a lot of silence for a long time and my brain is saying, WTF. In the office when we were messing with things and would pull one of the aids out after it was in for about 10 or 15 minutes it would be a real sense of disorientation as the sound just stopped, and then a sense of ease returned. It is really hard to explain.

I still had trouble with communication minus visual cues, but it was a LOT better. The audiologist said that was to be expected. I still couldn't understand a damn thing they announced on the bus, can anyone?

The audiologist said I should only wear the hearing aids a couple of hours for the first few days to try and get used to them and increase the time a little bit each day. So as to not get too overwhelmed. And that she would check the programming next time. And see what we needed to change. When she did the one test to see if I could hear the music on the computer playing, it seemed as if she needed to turn up the volum in the aid, which she expected, but wanted to wait until I had time to get used to them for a while, which made sense, and even more after walking out into the streat. Damn!

Ok. I have other things to post about from today later.

Today was a bit different. We worked on the narrow passage, stairs and doors. Though, some of these required what normally would have been verbal communication between the Sighted Guide and the blind person. I made it pretty clear that I would not be able to follow verbal communication when not facing the the Guide AND blind folded. At one point I wanted to yell, "What part of DEAF don't you get!?!?!" Apparently he didn't have a set of tactile signs for the verbal communication so I made up some just get through the training. I'm really curious if there is a standard set of tactile signs for this sort of Sighted Guiding so that we can use them and I'll learn the correct ones if I work with someone else.

Today he moved at a much more rapid pace, it felt like running to me almost. When I mentioned that he just said that is because I've spent so much time slowing down to avoid falling and running into things that a normal pace seems really fast now. We went up the stairs and down them, that was different at first, but I got the hang of it. One of the things I figured out and is kind of neat now that I realize it is that I need to use more than my hands for finding things like the railings. I realized at a point if I used my hip and upper leg I could search a much greater area faster when trying to find the railing when I knew we were at the stairs. Some stairs the railing is right next to you and easy to locate. Some it is further out in front of where the stairs start, others it is lower to the ground, some it sits off to the side further. Even when you are paying attention to the marker of "last step" it is hard to not try and take one more.

I'm getting better at telling what where we are in that area based on how the ground feels under my feet, especially when we get back to the parking lot of the building, that parking lot is soft and flat like nothing else we walk on (and the building blocks the sun). I need to practice on the doors some more. Not so bad on the pull doors, but the push ones I had trouble with. Again it's a matter of finding the way to orient myself so that I'm in the right place to push on the door properly. It also looks like there is some timing involved here to not move forward too soon or too late.

As for the tactile signs that I used for the day. I used the sign for transfer, 2 fingers drawn across the hand in a sweeping motion, for when I need to transfer sides. When there are stairs, I didn't know what to do so I had him take two fingers and just tap them against my my palm twice, it reminded me of a variation of walking up the stairs. And for door I was at a complete loss for something that could be done in one hand and coped out and hand him simply lay the manual letter D on its side into my hand. Since the number of signs was limited this was ok.

I talked about the trouble of finding my bus still when there are a bunch of busses at the same stop and they gave a bok that has a bunch of numbers in it. The numbers can be flipped in a way so that you can make the number of the bus that you are waiting for. That way you can alert the driver of the bus or another person waiting to help you get the right bus. The numbers all have braille on them as well to help finding the right combination.

In other news VR sent the authorization to the audiologist for the hearing aids. The audiologist was nice enough to order them based on the promise of the authorization, so I'm glad that it was taken care of before they actually came in. Just can't wait for them to get here and go in for the fitting. My one interpreter was joking with me today when I got to class, she was out friday (the first day I was using the cane) and when she saw the cane said to me that this was new, "Got tired of falling and bumping into things finally, huh?" She's so funny.

It's been a long day.

My bus to Quaker Meeting was changed due to a race today. So I stood there for 45 minutes looking like an idiot. I think someone from trimet may have even been by, someone in a truck stopped to take down a piece of paper, that I wasn't able to read. My guess is that it had a notice about this. If it was that, you'd think they would have have said something to me having noticed that I was standing there waiting.

Oh well. Live and learn, check the alerts each week.

Today was my first day of mobility training. I guess I should back up a step and say that I went to the intake appointment with the Independent Living Resources group that was made a long time a go. They are very nice people. In the course of the intake interview they said that it is great that things will be happening through OCB, but it seems as if it isn't happening quickly enough and they wanted to know if I would like to start mobility training with them until OCB can take over. I thought about it and said ok, then the woman called in the man who would be doing it and he said he could schedule me for the next morning (I was kind of like, "Woah, didn't see that coming"). They will also be helping me with learning braille, peer counseling, and advocacy when/if needed. They are able to get things started more quickly because they don't use a medical model of qualifying people for services. To be honest I don't understand the model, but will try to get a better understanding later. Parts of what went on were confusing without an interpreter that day.

So today was mostly about learning to be guided. It was kind of weird at first, but once you learn to trust the person doing the guiding it isn't too bad. Telling myself to trust Christopher and stop shuffling my feet was the hard part. But, once I did that I walked quicker. It was funny because he noticed that I was paying attention to his body language more I guess than most people, I could tell at one point that something was there that I should pay a little more attention to by his body language and I shuffled my feet and sure enough I found it. He showed me the way he moves his arms to indicate that we are at a curb or step and how to step up/down safely.

In future lessons we will work on things like when being guided, how to go through a narrow space and up/down stairs properly.

While I was given a cane today, the instruction for it was very rudimentary. But, enough to get started. I was shown how to open and close it safely and properly. And for use, just a very simply cross body method that involves no real movement of the cane. It allows for finding curbs and other things for now. He also showed me quickly how to use it help judge how far I was stepping down off the bus or finding the distance to the step onto the bus. He pointed out that if I stand with the cane in front of me while waiting for the bus the driver will see that and know to stop for me. That became very obvious when I used it today on the way home.

I used the cane on the walk back from the bus to the apartment and found that it does let me move a bit faster than shuffling my feet. And wondered how it much it will help once I really learn to use it. Someone tapped me on shoulder to let me know the light had changed when I was waiting to cross the street (this is a nice thing since I really can't see the walk lights and have to guess by other means).

It was just a first day, but while I didn't want to use the cane it is hard to say it didn't help.

On Monday I go back for more training and also will be doing some braille class. I've marked the keys to my dorm with a braille "I" and "O" for indoor and outdoor key, so I can tell the difference. It has helped a lot. Not that I know a lot of braille at this point, but have done some learning on my own, and they said I had a pretty good head start.

Guess that catches you up on that news for the day.

Saw my primary care doctor today to follow up on a few things and give her the paper work and discuss what is going on with a my vision care. One of the big things I wanted to discuss with her was the fact that in the past many doctors discounted my symptoms as hypochondria because of my psych history. Or it was thought of as hypochondria until there was some sort of physical evidence and then suddenly it was a psycho somatic symptom/illness, and similarly it was written off. Either way, I was dismissed and made to feel as though I was crying wolf.

She told me that there was nothing about the report she received that indicated I was crying wolf. And that she was impressed with how well I was handling things, considering how much was going on. She agreed that the other doctor was out of line in not taking the information directly to the Commission for the Blind, because it was clear that is where this belonged and was glad that I had found a way to get it done.

Told her I wanted a reality check and make sure I wasn't over reacting, she said if anything I was under reacting. And encouraged me to learn braille if I thought it would be helpful.

Glad I went.

Well the weather surely doesn't feel like Spring!

Took Chance for a walk first thing and then went for a swim, 1200 meters. While I was there ran into some people from the Swim Club and decided to join. Hope this will encourage me to go more often and they have monthly groups to work on swimming technique. I think it will be a good thing.

The rest of the day has been running from one place to the next to do things for classes. Getting paerwork for notetakers and setting up meetings with teachers about this and that. Talking about getting a tutor for the class that I have an incomplete in from last term. Trying to locate the room for the first class.

Now, trying to get a little dinner and take Chance out before going to the evening class. I'm beat really, but it is a good kind of tired.

I made some connections about potential work for an independent summer study class that would set in motion were my graduate work would be, and talked to people about who I need to see to make the right connections for getting and advisor. I know that it is a year out, but that really isn't that far away. I feel like some really solid things happened along with a lot of work to make this semester work.

Staying in the present while looking to the future, it is a difficult thing to do, but has rewards.

Off to finish things up before heading off to class.

They are going to work with the place that tested my hearing to get the hearing aids, this is good news. It is easier to keep working with the same people and my counselor was happy that they gave a good price and included followup appointments.

She called the Commission for the Blind to ask about mobility training and ended up scheduling an evaluation for services through that office. That appointment will be next month on the 24th.

It was a good a meeting, a lot felt like it was accomplished.

Day's come, day's gone
Try and lose, lose and try
Spin round and not done
Yet life still passes by

Here is a picture they took of me with Chance the first day we went down to meet him. He is going to spend the night and will write more about it later.

Taken at project pooch

This isn't the greatest due to the OCR, but I hope it shows a few things.

Things I don't understand exactly. What inferior cupping mean? The loss of tissue sounds concerning. I don't under stand the Cup to Disc ratio, but googling seems to say the ratio should be smaller.

At the end are plain scans of the visual field test. I don't understand any of what is written, and there are pictures. Click on the images for a larger view.

---

Wearing: 2 months
right eye: -7.OO +2.75 x O92
left eye: -6.5O +2.25 x O96

VisuaI acuity:
0cc: SneIIen - isolated
right eye :2O/2OO
left eye :2O/2OO
BEO: 2O/2OO

Nsc: BEO: 2O/2OO @ 5 inches
Ncc: BEO: 2O/4OO

Ncc:
Prima: 12-14XT'
Downgaze:
NPC: Can not converge

Dsc: ortha
Nsc: 2O X(T)'

Optic Nerve: slightly greyish and less nervous tissue: inferior ring is thin OU. Cup/disc ratio O.6 to O.7 OU

IMPRESSION:
1. lntermittent exotropia
2. Myopia
3. ? Optic neuropathy -- change in optic nerve cupping over the past two months with loss of nervous tissue and inferior cupping.
4. If there is no optic neuropathy. then will need to consider ERG to evaIuate retinal function particularly with night
vision problems. No signs of RP presently (optic nerve pallor. retinaI vessel attenuation, pigmentation)

Left Eye

Right Eye

They think they found the reason I have such a difficult time with converging my eyes together. There is a severely reduced field of vision, something I never noticed. And some questions about night vision surprised me as well, apparently all of this is related. There was a noted decrease in the amount of optic tissue, and it greying. So, now I have to see a neuro-opthamologist. That appointment isn't until the middle of next month, which makes me concerned over the fact that she will order more tests (most likely a CAT/MRI brain scan) will take time and then waiting for another appointment with the NO.

There was enough information for the doctor to help me get mobility training, right now with glasses my VA is at 20/200 and I was unable to decypher the test about the field of vision other than to know that they said it was greatly reduced. Retinitis pigmentosa is the suspected cause, but there are a lack of classic indicators (hence the need for more testing).

It is frustrating that the doctor would not do what was needed to get some help with mobility.

Today the audiologist took the ear molds. It was weird getting what felt like cauking put in my ears.

The audiologist had a discussion with "Audient" and they decided that the hearing aids they offer really aren't the proper ones for my hearing loss. The place I have been going thinks they can give Vocational Rehab a similar price on a better hearing aid for me. Phonak Una AZ SP.

Right now it is a matter of finding out what the vocational rehab will do and if they authorize the purchase, the hearing aids will be ordered immediately. They said it takes about 10 days to get the molds back and then we can do the fitting and stuff.

Very neat.

Monday night they took me to the ER after an overdose on klonipin. I don't remember much of the afternoon Monday, and none of that night. It was Tuesdaya nd I was in restraints at the ER. Fun way to come back to the present.

Despite what some people may think this isn't about Maria, sure our trouble saren't elping things, but this fall down had more to do with frustrations at not getting anywhere in other areas. Perhaps it is a deep deisre to fix thie things that Maria is having trouble with, but it isn't because of being lovesick.

That said. I had another bad fall on Monday and it seemed that all of this waiting and trying to get people to make a cecision about what they can and can't do for me about the vision issues is starting to wear thin. How long can I continue that path.

The social working from the clinic is going to contact soem people and see what she can do about the O&M training and I'm going to go sek out another eye exam. It woun't be with an optemalogist but rather an an optemetrist today since that is what I can get an easy appointment with.

the feeling that I will be having mobility issues forever and falling, missing busses,etc is overhwelming.

from Project Pooch

Project POOCH, Inc. ®, is a non-profit, 501c(3) organization that has successfully paired youths incarcerated at the MacLaren Youth Correctional Facility in Woodburn, Oregon, with homeless shelter dogs for over a decade.

Youths (guided by professionals) learn to train the dogs, groom them, and find them new adoptive “forever homes.”

After visiting we found "Chance" a yellow lab. CHANCE is really sharp - he got 6 A's and 2 B's on his intake report card from the Humane Society. He is now on the way to graduating at the top of his Canine Good Citizens class. Chance loves people and other dogs, but will do best in a home and no cats or chickens or other birds. He needs a home where he can have plenty of exercise daily and will be able to spend lots of quality time with his adopters. He has been neutered, micro-chipped, and vaccinated. (he passed his Canine Good Citizens report on Saturday).



On saturday Chance is coming for an hour visit and if that goes well he will spend the night and if that goes well then we can adopt him. He was very friendly and started licking my face when we first met.