Lordy, lordy, I feel anxiety risin’.

May 12, 2016 at 11:59 AM | Posted in AWEsome Sights, Blah Blah Blah, Center training, Despair, My brain, my enemy. | 2 Comments
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6 weeks. 6 full weeks until I’m done at the center. Has it really been that long? Is it really only that short of a time away? I may be freaking out a bit. There’s a lot to do in a short amount of time. I’m worried and excited to go home. Worried that I’ll revert to old habits and excited because I miss my spouse and cats desperately. 

Today my anxiety level was raised quite a bit. It was time for drops. Where each of us are dropped off somewhere and our task is to find our way back to the center. I’m generally not too worried once I’m out of the vehicle but the driving around beforehand is the freakiest. I get so worked up to the point of tears. It’s awful and I hate it. But as soon as I got out of the car I knew I was downtown and it didn’t take me long to get where I needed to go. Got a coffee while waiting for the bus. Then made my way to the center. I’m still shaking from the anxiety and adrenaline from the exhilaration of knowing where I was. 

I realize I haven’t talked much about what I’ve been doing lately because I’m going through so many emotional changes that it’s easy to forget the other accomplishments. So I’ll give an update. 

Food I’ve made: vegetarian chili, lemon bars, coconut macaroons. All were delicious and I may have shoved the coconut macaroons into my face so fast that I felt ill afterwards. 

 Also I have started a sewing project where I’m making a crochet hook holder out of a washcloth. You don’t even know how hard t is to sew a straight line with a machine. It’s super freaking hard. After looking online for some tips I’ve made a pattern out of a sheet of Braille. Making a row of the letter k and sewing in between. 

Shop class: things are going well. I’ve used a hand held sander, a biscuit cutter, the chop saw, and I’ll let you know what my project is when it’s all done. 

Braille: still moving along nicely. 

Cane travel: I’ve been going downtown a few times and having to find addresses with a fellow student/staff trainee and then finding the way back to the apartments. 

Computers: I’ve been doing well using the screen reading program JAWS and I can surf almost as fast as I can sighted. But seriously web developers? Get your act together. Make your shit accessible. It’s not too hard. 

I’ve been networking with some artists and have an opportunity to show a piece of art this summer so that’s exciting. 

I’ve been having a real rough week after an amazing weekend with my fantastic friends and my wonderful spouse. It was so hard to come back an I’m having a hard time getting my head back into the swing of things. Just floating through each moment hoping I can make it through. Sleep has been especially difficult. I have maybe slept 4-5 hours a night. And I’ve been straining my eyes reading print because I can read it faster and I need te escape. 

Here’s hoping you’re all having a wonderful day and week. You all deserve it and I wish you all the best. I could really use a hug. So I offer one to you all. Thanks for reading. *Big hugs*

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In The Blink

May 5, 2015 at 5:50 PM | Posted in Braille Wail, Despair, EYE believe | 2 Comments
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Oh hey, I should finally write a post on my blog. It’s been a little while. (Looks at last post, sees “5 months ago” and grimaces.)

Oops. I apparently have been away longer than I meant. That or I was abducted by aliens and experienced lost time. Or a lot of changes are going on and I haven’t been ready to talk about it.

I’d bet on that last one, if I were you.

I wasn’t sure if I should continue this blog and maybe start a new one or if I should change the name of this one.

After a fun runaround in the medical community (Too many different doctors, ACK!) I finally had the right test that mapped my field of vision. I’ve attached photos of the current fields of view. the blue line is the one that is used for blindness. To be legally bind due to the field of view, it has to be less than 20 degrees. This time it most certainly is. I can now be considered legally blind.

Here is the field of vision for my right eye.

Here is the field of vision for my right eye.

Here is the field of vision for my left eye.

Here is the field of vision for my left eye.

I knew it was going to be bad, because I’ve noticed more of my peripheral going over the years. I’ve also said how I’m sick of waiting around for the ball to drop and to just get on with it. I was not prepared for it actually happening.

I was not prepared at all.

I still haven’t cried about it. I know I need to and I know it’s hurting me more by bottling it inside, but I don’t think I can deal with it yet.

I’ve switched to logical mode. If tears do start welling up I suck them back in and I toughen the skin. It’s not the time for crying yet.

I’ve finally found a new doctor for general practitioning and they seem to care about your whole well-being. I’m so used to being just another patient to be run through the mill that this was a surprise and reassuring. On their advice I’ve started seeing my old counselor that I haven’t been to in a year and a half. It was really nice to see her again and with her I should be able to slowly work through the emotional side of things.

Until then I will keep the logic shields up.

I have been getting help and working with the Nebraska Commission of the Blind and Visually Impaired. They help individuals realize their work goals as well as how to live independently. I have a case worker who will be helping me in my desire to make, show and sell art and I am working with a woman who is teaching me skills with cane travel and other things.

This training is pretty intense. they like to give the same training to everyone so they can decide what works for them no matter the level or ability of sight. To do that, everyone is equalized with a blindfold. What I use is pretty neat. They’re called sleep shades and i can keep my eyes open while wearing them. I can’t see a thing (except those pretty flashing ripples of light that pop up every once in a while. Thanks RP!)

So I have been learning to walk around the state building in Omaha under shades, just using my cane and vocal queues from my coach. They say I’m doing well. I’ll take their word for it.

(Pause for a moment while those lovely flashing lights float around and cloud my vision for a second.)

Okay.

Another thing offered is a super intensive training at their center in Lincoln, Nebraska. It’s an immersive course over a period of 6-9 months where I would stay there in Lincoln and have classes five days a week. 4 hours in the morning and 4 hours in the afternoon. All under those lovely sleep shades. Classes are braille, computers, home management, cane travel and wood shop. Yes, you heard/read right, wood shop. It’s confidence building course, plus you get to play with power tools.

They really want me to go to this training. They’re excited for me to be proactive and do this early so I can already have the skills as my sight fades more.

I understand this, I really do.

I went on a three-day stay, where for those three days I would shadow someone who is currently enrolled and stay overnight in the apartments. the apartments are pretty nice. Studio apartments with a decent bathroom and kitchen and nicely furnished.

It was interesting. That’s pretty much the only way I can describe it. I learned things. I got some confidence with the white cane (I even ventured outside around the building, where yes, I did cry a little due to my fear of heights. apparently walking up a slight incline under sleep shades is terrifying.) I read 1 1/2 pages of braille. I can write it decently, reading I’ve never been trained on so it was quite difficult. Took me about 3 hours to do it. Took me right back to childhood. Computers was fairly easy and soothing because it was brushing up on my keyboarding skills without the distraction of looking at the keyboard or screen like I normally do.I even chopped a green pepper and washed dishes under the shades. (Wood shop didn’t happen because the teacher was sick.)

Everyone was pleasant, helpful, encouraging and patient.

I was the one not ready. I’m not emotionally ready. I need to get to the acceptance end of grief or a least a lot closer to it to make it through that training. I also am not sure I want to be away from my husband, friends, and cats for that long. Sure I can see them on some weekends, and even some weeknights if they really wanted to make the drive out.

I have another meeting at NCBVI this week and I will be able to talk about it more with them.

Oh and for those keeping score, I got my second transcript attempt back for braille certification. Got a 75/100. Not good enough, needed 80. I may have sobbed a lot when I got those results. I have my third attempt finished and I am currently proofreading it. Third times a charm I hear.

The Little Things Add Up

September 20, 2014 at 4:54 PM | Posted in Blah Blah Blah, Despair | 3 Comments
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Today is an angry day. I’m angry at everything. I’m so angry that I can’t physically speak about why I am angry. So I will list them here so I can at least get them out of my head for a little bit.
I’m angry because I didn’t work on any art today.
Because my left hand smells like onions since yesterday.
Because it’s September and still hot like summer.
Because I can’t get this anger out.
I’m angry because I don’t know if this is real anger or side effects from the Lupron Depot injections.
I’m angry because there are so many dishes and no dishwasher soap.
Because anything I want to eat in this house requires me to cook it.
Because I am cooped up in this house because there is no eras on for me to leave it. My art isn’t exactly portable and no one wants to hear a consistent pop pop pop of Braille at the library. Because it takes half an hour to an hour to get anywhere by bus plus that coming back that I may as well stay home.
I’m angry that I don’t have all the ingredients to make anything from my cookbooks and can’t get them.
I’m angry that I’m no longer bringing home a paycheck which turns out to be precisely what we used for anything more than bills.
I’m angry that I cry when I’m angry.
I hate putting drops in my eyes four times a day because they sting and I’m feeling very controlled by the scheduling of them.
I’m angry that mosquitoes are still biting me.
I’m angry that I feel like I can’t say anything negative because I don’t want to bring anyone else down even though I am not responsible for anyone else’s feelings.
I’m angry that my hair is getting long and I can’t afford a hair cut, or color so I’m stuck with mostly my natural hair color and a tacky severely faded pink.
I’m angry that I keep snapping at my husband when he’s trying to say anything to me and that I’m making an awkward and uncomfortable environment for him.
I’m angry that I feel inferior to most people around me due to education level and monetary status.
I’m angry at my laziness.
I’m angry at the voice in my head that tells me to get over myself using the voices of people I know.
I’m angry that the font size on the main screen of my kindle can’t be changed so I have a hard time reading it.
On any other day I find it cute but today I’m angry that my cats find it necessary to be in the same room as me.
I’m angry at he sun and how bright it is.
I’m angry at my 12 years of neglecting art and therefore am without those 12 years of practice.
I’m angry with myself for not being able to cope with the little things.

That seemed to at least have eased the giant knot of black anger in my chest but it’s still there. Little by little it should go away. Or my hopes are it will have pissed off by the morning.

Slow Burn

August 25, 2014 at 9:41 AM | Posted in Despair, EYE believe | 3 Comments
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Lately I’ve been seeing many of those ‘feel-good’ articles in relation to vision loss. So-and-so has [insert genetically inherited eye disease] and despite this is [insert super powered feat of magnificence.] Like these lovely people, Blind woman climbs mountain in Maine, Blind man to tackle seven marathons in seven states over seven days for Aussie kids, Visually impaired Alexandria resident set to take on the Ironman world championship. Don’t get me wrong, I do enjoy these stories from time-to-time.  Reminding me that there is life after blindness, one can overcome so many things and dreams can come true.

However, there are times when their stories make me angry. These people are not like me. They do not choose to do things like me. The very idea of running for more than the time it takes to run from the bathroom to the bedroom without a towel or robe makes me shudder and ache.

My accomplishments are much smaller in comparison yet huge for me. As I lose my vision slowly my headline would read, “AREA WOMAN MAKES IT THROUGH THE ENTIRE DAY WITHOUT CRYING IN FRUSTRATION DESPITE IMPENDING BLINDNESS” or “FEMALE WITH FAILING VISION FAILED FALLING OFF CURBS, FRIDAY.” Those are the happier headlines (and proof as to why no one pays me to write headlines.) Most days those headlines turn into the pathetic, long-winded, and depressing comic that everyone skips in the newspaper.

The truth is that every day I go through a little bit of hell.

I filled out a survey about my vision for Foundation Fighting Blindness (so they can track our info for their research) and one of the questions asked “How often do you think about your vision?” and one of the answer choices was ‘every day’. I, of course, chose that one right away. Not a day goes by without being reminded that my vision is slowly going the way of the dodo (and hopefully jeggings.)

I thought of a lovely descriptive visual for you about where I’m at in my vision loss. Imagine you are stuck. You’ve been caught in a way that your legs are pinned but your feet are sticking out. Your arms are free and can reach food and water so you can stay alive but you don’t have enough strength to free yourself. In front of you is an exploding volcano. The lava is racing towards you at a snail’s pace. You can feel the heat on your feet. You know its coming.

As far as you can tell there are two other types of people. The successfully fled and the unfortunately dead. You’re pretty sure there could be others like you, but clearly not in your vicinity. Your fate is simultaneously so very close and very far away. The heat is hotter everyday, it may just be half a degree, but you can tell.

Most days you wish the lava would just pick up it’s pace and finish the job.

There are days you remember that a bunch of those fled villagers are working almost around the clock to find a way to rescue you. You’re not sure which you want to happen faster because either direction is better than where you currently find yourself.

There’s also the really ‘fun’ days when you beat yourself up for being depressed about your situation because so many other people have worse things happening to them. Then, if you’re lucky, you’re able to remind yourself that frikkin’ lava from a frikkin’ volcano is about to frikkin’ burn up yo’ behind and you are able to allow your depression to continue.

Now I know what you might be thinking, blindness does not mean death. My response would be close your eyes or look up into a sunny sky. Now imagine that that would be the only thing you could see forever. Never ending darkness or the brightest white light or even a fog of light. I don’t even know what experience I will have. I do, however, take a small solace that it won’t be a test pattern (kids, Google it.)

Anyway, how is this not like death? Or at least something to mourn. My life will be forever changed no matter what happens. No matter what scientists or engineers come up with or when. Some people think about where they will be in five years, I wonder what I will see.

My vision is so different now than five years ago. I do know it would be much worse if not for  the medication. I would have already lost my central vision, that much I know. So, of course I’m very thankful for my medication.

Right now I’m dealing with fuzzy vision in my left eye (fuzzy as in like looking through glass coated with vaseline), some of my central vision is going and flashes of light like ripples of water are more frequent than normal. My retina doctor believes I am having side-effects from cataracts surgery. More fluid build-up in the back of the eye and the membrane that holds my new lenses has become cloudy. Along with my normal two pills a day, I now have to put two different drops in each eye four times a day for six weeks. I may have to go back to surgery to have lasers take care of the cloudiness in the membranes. Exciting.

There’s currently no hope for my peripheral vision loss.  Thanks to that peripheral loss I bump into so many things. I used to only bump into a couple things a couple times until I become familiar with its location. We all do it with our surroundings. You are able to get around your house from small visual cues and spacial memory. If your visual cues change you can bump into things until your spatial memory takes over. My visual cues are constantly changing so my spatial memory can not keep up. I am a pinball in my own kitchen. The stove, the fridge, the counters are all my enemies. My feet are the enemies of my cat’s tails. All of this is frustrating. It hits deep into my ego, insulting my intelligence, and it makes my blood boil.

I’m not taking this change and loss well. I’m not running through life embracing joy like they shove down your throats in feminine hygiene commercials. I finally have an actual reason for moping around like I did for no reason other than hormones in high school (don’t worry, I’m not going to try writing poetry again *shudders*.)

I wasn’t sure about actually posting this, until my husband encouraged me. Basically for the same reason I was writing it in the first place. I wanted to let anyone know that its okay to hate what is happening to you. Its okay to feel horrible day in and day out. Its to be expected. Its scary. Its difficult. Its heart-breaking.

Your pain is your own, but you are not alone.

 

When it rains, it pours and there are many clouds.

May 26, 2014 at 7:05 AM | Posted in Artsy Fartsy, Despair, EYE believe | Leave a comment
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It is pretty wonderful being able to sit here and type this. Being able to see the screen without blurriness or strain is more wonderful than I ever thought possible.

At the end of March and a week later in April I had one of the most routine surgeries one can get to improve their vision. I had cataract surgery in both eyes. It was two pretty easy and quick surgeries but the month afterward was hell for me. I was not blind from my cataracts. They contributed to my night-blindness (my RP is the main culprit for night-blindness) and may have been contributing to fuzziness during the day time. It’s hard to say if it was really doing that because I’m missing so many areas of my vision that I’m never sure if that’s a blurry area because of a cataract or because that’s a section my brain is making up.
Either way, my new retina specialist recommended I get the surgery. It makes sense. If it is an easy procedure and they will only get worse with time, why not clear up my vision now.
I say it was hell afterwards because I could hardly see after the surgery. Everything was getting more and more blurry as my old glasses failed to help with the new mono-focal lenses in my eyes. I could see far away without it being blurry but close up is gone. It’s a watercolor painting that someone spilled more water on top. Nothing came into focus from arm’s length closer. I had been warned that I would have the eyes of a 40-50 year old and would need to compensate for the loss with those readers you can buy at a pharmacy. I did buy a pair but it was hardly help. Those kind of glasses do not take into account if you have an astigmatism so everything was a strain.
I no longer could focus on my computer screen at work. I had to put on the readers and get close to the screen to figure out what I was doing. I hated every single day of it. I counted down until I was allowed to go in for a new prescription for new glasses. You have to wait a month after your last surgery to make sure everything is settled and looking good to the eye doctor before you can go for the new Rx.
I thought the day would never come. I thought I was doomed to strain to see anything if I could see anything at all. I was in a big ball of self-pity and despair.
This really hit home the fact that some day I will actually be blind and there won’t be a countdown until a day that I will see again. There are so many advances in science and technology that I had brushed off the thought of final blindness and forgot.
I am deeply afraid of being blind. The helplessness and frustration and the general lost feelings were terrible. I don’t want to feel them again. But I have to remember that I will someday. I have to be ready for it. I need to prepare.
But how does one prepare for such a thing?
You can sit and watch a friend or family member on their death bed and know it is coming but it does not prepare you for the actual death. Your mind and heart are still shocked from the loss.
I could prepare by learning skills one needs to use to get around when blind. Tips and tricks to identify your clothing. Equipment to read and write in braille. Equipment to keep yourself connected to the world via the internet. How to use the infamous white cane.
The skills needed are really best learned when sight is mostly if not already gone. The equipment is expensive and will be outdated by the time i need it. All of these things would make me feel like an imposter. Like I am cosplaying a blind person. Like I am taking equipment away from those that need it now.
What do you do?

I think all I can do is wait. That and keep the knowledge that it IS going to happen one day prominently placed on my brain’s cork board of important things to remember.
Until that day comes I also need to remember to keep living. It is extremely difficult not to wallow in despair knowing that watered-down watercolors with giant areas made up by my brain is on the horizon. For too many years I have done this and have avoided or given up on art and creating. I’d make things here and there as gifts but never seriously. I think it’s time to fix that. I think I am now in a race with my failing vision. I’m going to take its looming figure as a challenge. It’ll see how many things I can create until it rears its ugly head.

I now have new glasses, those snazzy progressives that have three different strengths but without lines. They are pretty difficult to deal with for my computer at work. The area for that distance is kind of small but I just need to learn to move my head and not just my eyes to see everything. It is wonderful to read again. Having my eyesight corrected made me feel elated for a while but now I’m back to being very aware of how much the RP has taken from my field of vision. It’s a constant battle against self-pity and depression. (Add medication for treating endometriosis which makes your body basically act like menopause, now there’s a recipe for “fun”.)

I have never needed a vacation more than the one I will be going on in 5 days. I have a heck of a beasty for a camera that was a gift from my husband and father-in-law. I now have the Canon Rebel T5i Digital SLR. It has quite the thick book of instructions. Time for me to get reading! Prepare for many pictures of the skies over the Midwest and blog posts about my two week adventure on a tornado tour! Fingers crossed for amazing weather viewing.

Click here to read an article about how cataract surgery is curing blindness in developing countries.

Click here for a great documentary for National Geographic with the same doctor in the above article in North Korea. They were allowed in to perform eye surgery.

Click here for information about cataracts and treatment from the National Eye Institute.

Click here for a fact sheet from Womenshealth.gov about endometriosis.

On Tuesday, my birthday, we get to take my mom in for her to get cataract surgery. Luckily she only needs the one eye done right now. I could have sugar coated the after-effects but I didn’t. I flat out told her it was going to suck. However I did tell her it was an amazingly comfortable surgery. They don’t put you fully under, just give you some amazing anti-anxiety dopey meds. I felt pretty uncaring during the surgery. The first one I was mostly aware but I didn’t care what was happening. The second one I think I had a bit more juice so I’m pretty sure I fell asleep. I know I passed out in the car on the way home. My stomach took over once I got home and manipulated my arm, hand and mouth to eat. Then back to being passed out for the rest of the day.
I hope her surgery will be the smoothest of all.

It’s Okay.

March 19, 2013 at 10:46 PM | Posted in Change the World, Despair, EYE believe | 2 Comments
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My eyesight is not being happy of late (I’m quite sure it’s stress related for the most part). I’ve fallen down twice in over a week and I’ve nearly fallen many other times. Stairs are a huge problem now. I’m having trouble even in daylight to discern where they end and begin.
I plan on getting my field of vision mapped again and it will be interesting to compare how much has changed.
I really need to find a lightweight walking stick to help out but that requires research and a way to get to where I need to go.

On a related note, I’m really disappointed by Omaha’s transit system. They don’t run very late at all. They have a transit center at one of the local community colleges yet they don’t run all their busses after evening classes are done. Also there’s a storm chasing class I’d like to take but it’s at a spot where I wouldn’t be able to take the bus home. This town is not accessibility friendly. Not for low-visioned individuals or non-car owners. Perhaps I should get more vocal about it along with the issue that only legally blind people are allowed by law to use white canes. I may just do that…

There are so many days where it just feels great to be alive. I crave those days. I didn’t understand those days for a long time and lived in the presumed comfort of misery. It was safer, I knew what to expect. The only thing that could make misery worse was more misery and you already were feeling it so it wasn’t as scary. Great days were dangerous, the difference to misery is so much greater so I didn’t think it was a good idea to have a good anything. It was safer.
I have now, with the help of therapy, have come to realize how good it is to have good in your life. It’s deserved and should be a part of everyone’s life.
I’ve also come to the place where bad times are okay, too. I know they still happen, I just need to not live in them. Getting back on the horse is the name of the game.
Even when feeling soul crushing despair I know it’s okay to feel this way. I know I don’t have to feel this always. For now it’s here and I need to work it through. Tomorrow will bring something better because I can start the day differently than how I ended the last.

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Sunset from a while ago

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