Category Archives: Stuff

The junk pile for things yet to be solved or whatnot.

I’m Growing Up

Picture: anime girl with birthday cake.In a few weeks, I will turn age thirty-six on my birthday. ^_^

I’m getting older in binary code, just four more years left until I’ve reached the age of 40! I have been growing up a bit lately, becoming more of a responsible and independent adult within my life.

No. I haven’t ended my love for anime. No, I haven’t stopped listening to dubstep. No, I haven’t given up video games or Pixar movies! Hey, these things will stay with me well after I’m old and gray! SHUT UP AND LEAVE ME ALONE! >_<

What has changed is that I care about my health these days. I’ve stopped treating my body with a blatant disregard as I have done so in my twenties and younger years. I’ve been through three surgeries in the past two years; an emergency appendectomy, an eye surgery (keratoplasty), and one myomectomy. Surely, everything is alright and set within my body for a long while, and I will not need any more surgeries any time soon. I hope. o_o

Before every surgery, I was asked if I had a “living will” while the surgeons simultaneously assured me that everything will be okay and I didn’t have to worry about dying on the operating table… but… just in case, did I have a will? I did not.

After my myomectomy, I decided that I would sit down with the forms and fill out a living will. It was several pages long and a very daunting task, as it asked very tough questions concerning when it would be okay for doctors to stop performing resuscitation, what mental or physical state would I have to be in when I would want a loved one to “pull the plug” on my life support, etc. It was a bit morbid to fill out these forms, to say the least, but I learned something very profound about myself.

Picture: girl with flower.I have learned that I have a very strong will to live, as the only situations that I would agree to the end of my life support is if I have suffered brain death or if I’m so far gone that I’m not aware of who I am nor aware of anyone else in the room with me, with no chance of recovering from that. In order words, trapped unaware within my own dying brain is a good reason to pull my life support, I believe.

Other than that, I very much want to live, even if I lose limbs, can no longer write or do the hobbies I enjoy anymore, and can only communicate like Stephen Hawking with a special machine in a chair for the rest of my life. I don’t care! As long as I can keep communicating while being aware of myself and those I care about, I can always gain new hobbies in life. I know it may not be easy and there could be a bit (or a lot) of pain involved, but I will go through it and face it, as long as I keep living for just a few more days longer.

And this is a very profound thing that I’ve learned about myself, because in my twenties, I didn’t care to live at all. I tried to take my own life constantly and when I wasn’t doing that I treated my own wellbeing and safety as very unimportant objects. I’m a bit in awe that I am looking forward to age forty and beyond. Whereas in my early twenties, I had believed that I wouldn’t see the day of reaching age thirty.

Anyway, I have been looking after my health for the past three years now. When I first moved to Minnesota, it started with a diet change; less salt, less carbonated sugars (less soda and more natural fruit juices and water), less takeout or fast-food meals and more home cooked meals, and more fresh vegetables. This has greatly improved my blood pressure stats to normal and I get great reports back on my heart as well.

I began to work on my mental health and stress levels. I don’t allow toxic people within my life anymore. I had to say goodbye to a few toxic people last year, but more on that topic some other post. I have a list of activities and things to do in order to de-stress, which I wrote up with my therapist during a session. I make sure to show up for all of my therapy appointments and to work hard on my homework assignments.

I do go to regular medical check-ups, blood work is done and so on, and I follow the doctor’s advice. I do get my flu shot every year. I try to exercise a bit, not just sit in front of my laptop all day (which is highly tempting to do!), so I do go out for walks every now and then.

Picture: anime girl in front of laptop with cat.I try to make sure I get enough sleep, at least eight hours, but sometimes I do slip up and stay up all night when I’m working on some project or other. Oops. I’m still improving that habit. ;^_^>

Lastly, it’s been 13 days, 16 hours, 34 minutes, and 50 seconds since I’ve last smoked a cigarette. How do I feel? Well… like I want to rip the head off of a wild boar!!! However, besides my nagging cravings, I guess I’m doing alright. Perhaps. Yeah. *twitch* >_e

I believe that caring for my well-being and health is a part of what it means to grow up, even just a little. Overall, I am doing very well these days. The better I physically feel, the better I feel mentally and spiritually.

Anyway, I shall end this long post here, with a song: Until The End (feat. Q’AILA). Thanks for reading and I wish everyone an awesome November! ^_^v

-D

Living With Mental Illness

Picture: anime girl with aqua hair.Today, I would like to write a post, clarifying a bit about my life with mental illness. I’ve alluded about my struggles with anxiety, PTSD, and past struggles with depression in several of my posts, however, I realize I haven’t yet discussed it head-on. That is kind of strange that I haven’t done so yet, on a blog about my quest for happiness. Hmm… o_O

Mental illness is often stigmatized in society and I did grow up hearing the popular criticism that people with mental illness are “crazy”. It was a very common judgment from my relatives and community. So, when my issues started at the age of six years old, the first emotions I felt was denial and shame. I tried to pretend that there was nothing wrong with me and I tried to keep an appearance that I was “normal”.

My issue started as social anxiety at the age of six, during the time that I was enrolled in the local Elementary school. My parents kept me very sheltered and away from peers, so I was terrified of being around other children for the first time. It didn’t help that I had a sadistic father who thought it was amusing to whisper to me that the other children were going to hate me because I was so stupid and lame.

I’ve always been a nerd, even as a child, so I was excited to go to school because I LOVE learning. However, my father’s cruel joke messed with my head considerably, and every time a fellow classmate made fun of me or a clique shunned me, it served as a confirmation that what he had said to me was the “truth”.

During all of my school days, from age six to eighteen, I pretty much withdrew away from my peers and was much bullied for being “odd” or different, as I was usually the only nerdy kid in the class that always followed the rules and loved to do homework and other learning projects. Yes, I was very much the Hermione Granger character in school, minus having cool pals like Harry and Ron. In fact, I didn’t have any friends, apart from a few cats at home.

By the age of twelve, the lack of friendships and increased bullying is what caused my first bout of severe depression. Not to mention, that was the age that I had first discovered I am bisexual, which only added more anxiety and shame on top of what I had already carried. By the age of sixteen, I was convinced that I was a mistake to the world and the only way to remedy it was by killing myself. This lead to many unsuccessful suicidal attempts and five hospitalization stays at local in-patient mental health facilities.

I was alone, felt very ashamed, and hated myself more than anyone else could ever do so.

At age 21, something terrible happened to me, where I nearly lost my life. I will not share those details, it’s private information only for my therapist and relatives to know about it. Thus began my struggle with PTSD. It wasn’t until I was age 25 when I decided to reach out for help, to stop trying to pretend that I could handle my issues on my own, and to face my fears head-on.

It was terrifying for me to show up at the local clinic for outpatient treatment the first time. It was a lot nerve-wracking to sit in the waiting room with other patients, as most were there for medical appointments. I kept worrying that everyone could tell that I was the “crazy” one in the room, that at any moment I would be criticized for trying to seek help.

I grew up in an environment that often taught that asking for help is a sign of weakness, not a strength at all, and I still struggle to ask others for help even at the age of 35. I try so hard to handle every situation or task on my own, which can be a great trait sometimes, but often times it can be a huge burden. And my mental health issues are very serious, I couldn’t handle it on my own, no matter how much I had tried to. It even stings a little for me to admit it now, in this very post. However, it’s the truth. ;^_^>

Picture: cute anime girl with pill.In my first years of therapy in Philadelphia, I was prescribed a few anti-depressants, some helped a little and others just made my situation worse. It took trial and error to find the correct medication for me, which was a low dose of Lexapro. I stayed on the medication for a year, but after some time in therapy treatment, I didn’t need to take it anymore.

After two years, my therapist was transferred to another clinic (one that my insurance did not cover), so I was forced to have a new one. And the new therapist was terrible and unprofessional, she would make fun of how I dressed in sessions and things like that. After two weeks of getting nowhere and walking away from my sessions feeling like crap, I decided to quit therapy and go back to handling my issues on my own.

I had managed to keep myself stable for five years, but then the depression returned. It started small, but by 2012, I began to entertain the idea of suicide once again. However, I caught myself and decided that my environment was wholly unhealthy for me. I lived with drug addicts and criminals, I barely ate nor took care of my own hygiene, my health and eyesight were fading fast. At that point, I decided that I will not keep up the charade of staying in that environment and pretending that everything was okay.

My sister and her best friend (our roommate) were so kind enough to allow me to live with them in Minnesota. It took four months for me to save up enough money for the move, but I was determined to live, to not sink back into depression and suicidal attempts. It’s wasn’t a perfect escape, as I had to leave my cat behind for a while, but it was an escape to a better life for me all the same. ^_^

After I had settled in a bit, I asked my medical doctor for a referral to a good therapist. My doctor pointed me to the best therapist ever (Dr. Brenda) and I’ve been managing my mental illness well with Dr. Brenda’s help. I’m not taking any medication because I don’t need it for my particular case, our sessions are a mix of Cognitive Behavioral Therapy and learning much needed social skills. I haven’t had a suicidal thought since 2012 and my depression is very mild currently.

Most days, I’m happy and contented! And on my black dog days, I know just what to do! One of the things I do is to visit and read my posts here on this blog, to remind myself how far I’ve traveled in life thus far and I fight the lies of the dog, “You’ve never had a happy day in your life and you never will. You’re better off dead!”. Bad dog! That’s not true, you mutt! Where’s my rolled up newspaper? *thwack* >_>

Beyond my rambling, I really want to make a very important speech here, about mental illness. People who suffer it shouldn’t feel ashamed for it, nor does having mental illness means that you are “crazy”. Nor should you feel bad for taking medication (if it’s needed), any more than a cancer patient should feel bad for taking chemo. It’s important for you to do what is best to protect yourself from succumbing to your illness and to have the best quality of life, not to suffer in silence in order to keep up a social facade. And that social farce, in the end of all things, means nothing and is useless anyway.

You deserve to be happy. You deserve the best of what life has to offer. It’s okay to ask for and accept help for this issue. And most of all, I promise you, everything is going to be OKAY. You will get through this and experience true happiness on the other side. There are so many awesome things waiting just for you! So, keep fighting the black dog, keep moving forward, and don’t worry about what everyone else may or may not think about it!

Yes, sometimes it’s a struggle. Sometimes it’s SUPER difficult and you may want to just give up. It’s okay to feel that sometimes, but don’t linger in that emotion for too long. Cry a little, then roll up your sleeves and continue to march on. You can do this, trust me! I’m cheering for you! ^o^/*

Picture: girl by the sea.

And that’s not just a message to others who are dealing with mental illness, it is a little note for myself as well. In spite of having mental illnesses, it’s TOTALLY possible to live a happy and “normal” life (whatever the hell that means! lol). It’s completely possible to manage it down to a tiny palm-size pup and to gain a very contented worthwhile life.

I’ve done so and I’m not “special” or lucky, nor popular, nor super attractive, nor rich, nor especially intelligent. My IQ score is average, folks! If I’ve managed to achieve it, I believe that it’s possible for anyone else to do so as well, as long as they believe it can happen for them AND if they have the best support circle (therapy, understanding friends or relatives, or a caring community) to show understanding and compassion to them along their journey.

I would love to see the day when mental illness is no longer a thing to hide or to feel ashamed about. I would love to see the day when comments of “KYS” (kill yourself) isn’t thrown around online so much as a way to insult others, as it could seriously hurt someone with severe depression or encourage a person further to take their own lives. I would love to see the day when society doesn’t make fun of “crazy” people or to scoff at people who need to take anti-depressant medication in order to function.

Most of all, I would love to see the day when people are able to have compassion for others without having to share the same experience in order to spare a little bit of understanding, respect, and kindness. Not just for mental illness, but for many other subjects in today’s society. This world would be a better place for everyone, when or if that happens, I think.

Anyway, thanks for reading yet another LONG post! Ha! And today’s song is: ECHOS – Gold. Be excellent to each other and I wish you all the best on your journeys! ^_^v

-D

I’m An Essay Writer

holo writingThis is not a surprise to anyone who follow my blog or has earned the misfortune of communicating with me privately in emails. I write essays, pure and simple, and I like to believe that I write them well enough. The topics of my blog ranges from my personal life experiences, to music, science, art, writing, anime, or anything else floating around in my brain at any particular moment.

The fact is, every blogger is an essay writer! I’d thought I would mention that, just in case you didn’t realize it before. ^w^

I do try to dabble as a novelist, however, I seem to gain the most success in writing personal essays. Not just in blogging, but this is the format that I write my therapy homework, emails, and forum posts in as well.

I’m always surprised to find that people are generally more interested in my daily musings or random thoughts, than they are in any of my well thought-out 90,000+ word fictional manuscripts. I’m very curious about why that is so, however this fact  alone is very flattering and humbling at the same time.

I don’t view myself to be very interesting – very complicated and eccentric, yes, but not all that impressive as a human being. So, I feel a lot puzzled as to why my subscriber count of this blog is 57 currently, when I simply write and share random thoughts in essay form. Does it really matter what I think about… well, anything?

I’m just one person among over 7 billion people on the planet. I haven’t cured cancer or done anything remotely brilliant to solve the world’s problems. I’m just one ordinary woman who’s trying her best to find happiness and her true place in this world. And I haven’t solved that equation, not by a long shot.

However, I do notice that my therapist seems to love my homework essays, and she seems to believe that I’m a great writer because of them. Granted, she’s never read any of my fictional works and her judgement is completely based on my essays, however it’s still a lot confusing to me that people enjoy my little rambles and random thoughts so much.

Confusing, but flattering all the same. I must be honest and confess that I do enjoy the compliments and it does encourages me to share more.

animethinkingI have been seeing my therapist for over two years now, and I have written fifteen (four to six pages each) single spaced essays for homework over the years. Many are painful accounts of my past, some are about which goals I wish to reach in the future, and every single one of them are raw expressions of what I truly think, feel, fear, want, or need.I guess the same can be said of this blog, in a way…

Although, I tend to edit and mull over my blogs before hitting the “publish” button. With my therapy essays, I don’t think about it, I just select “print” and bring the pages with me to my sessions.

It’s highly fascinating to me that my rambles are entertaining to others and sometimes aspiring (as this claim was made to me a few times).

However, I kind of understand the appeal a little, as I tend to watch/read many essays online by others.Today, I have enjoyed a video essay by “Nerdwriter1”: All Along The Watchtower, Explored. And I’m currently in the middle of reading Stephen King’s essay titled: Guns. It’s a very good essay at that!

I care to read, watch, and follow the essays of others for the sheer fact that I’m constantly seeking new information or a different point of view to ponder. I comment rarely, but when I do so, it because I’m hoping the author will expound further on their view. Either that, I’m just leaving well wishes or encouragement, in appreciation of the author affording me a new perspective to mull over.

And yet, it still alludes me as to why my scribbles would be any interest to anyone, besides to those closest to me. Really, I’m not that interesting! And god forbid if anyone actually takes any of my self-advice (“lessons”) to heart for themselves! My life is just one huge experiment, so my “lessons” aren’t proven or disproved just yet. It’s just an alpha-version of a thought! o_O

fruitsbasketshigure

Anyway… as always, thanks for reading! Have a good day, everyone! ^_*v

-D

My Life After Corneal Transplant

Picture: anime girl wearing glassesYes, I know… I had claimed that my last eye update was my LAST eye update. I may have spoken way too soon, as I had no idea that I was in for a whole different experience post-keratoplasty (corneal transplant). I’m in the mood to blog today and this topic is on my mind. Yes, this is a long one, so grab a snack and buckle up! ^o^/

I must be completely clear that my story and experience should in NO way be taken as a gospel for corneal transplant. The truth is, Keratoconus is a very tricky eye disease and every case of it is different. The results of keratoplasty may vary for each individual, which is why I suggest that every person suffering with Keratoconus should consult a professional expert in the field of this disease, to find the right treatment for your particular case!

And yes, I do suggest taking a visit to The Mayo Clinic, if there’s one near you or if you have the opportunity (insurance) to visit one. They have a lot of great experts devoted exclusively to Keratoconus and treatment options. It may be a biased endorsement on my part, but then again, it is my blog. Heehee! ^o^

I also want to be clear that although my procedure was a complete success within my case, my eye disease is not cured. There is no cure for Keratoconus currently, however I’m so very happy and grateful for the time I have bought for myself, as my vision improvements will last anywhere from 10-20 more years!

Now that the disclaimers are out of the way, this is my story…

To summarize for those who’ve missed it: I had surgery on February 2nd 2016, at The Mayo Clinic located in Rochester, Minnesota. The surgery went well, I was unconscious during it (under anesthesia), and when I woke up I was a lot loopy (more details about that here: My Last Eye Update!), but not in pain. Dr. Leo J. Maguire, a leading expert in Keratoconus and treatment, assured me that we would “pack the eye with a lot of pain-killers”, so I wouldn’t wake up in pain or have to experience it for at least two hours after the surgery.

However, after two hours, I did experience a lot of pain. I would wake from my sleep often in so much pain, in my nice hotel room that I shared with my sister and roommate, and I would desperately wake my sister who was located in the bed next to mine. I would beg her for another prescription pain tablet, as Dr. Maguire had prescribed codeine for me, weeks before the surgery. I had experienced such painful sensitivity to light, to the point that it was unbearable and I refused to use my hotel bathroom with the lights on. I learned to use the toilet with the lights off!

The following day, after my surgery, I was to visit with Dr. Maguire for a check up and to remove the bandages and eye shield. This is standard protocol, yet the lights of the clinic hurt so much and I held my face in sheer pain in the waiting room. Once the doctor and his assistant met with me and saw how much I was suffering, they turned out the lights in the exam room and gave me a pair of dark glasses.

Dr. Maguire was genuinely sympathetic of my situation, yet a lot confused, as this wasn’t the usual response he had experienced with patients after keratoplasty. However, he admitted, “It’s a rare occurrence that sometimes happen with a few cases, but from my examination of your eye, it seems like everything is fine with the surgery.”

The moment of truth arrived, when I was to read the eye chart. Before the surgery, I had trouble reading the big top letter of the chart, with either eye. For years, I had walked away from these tests feeling like a “failure” somehow, because I always read it wrong or couldn’t read it at all. I hated to admit, “I can’t see it… I’m sorry.” So, I wasn’t too happy about reading a chart that was my nemesis for so long, while experiencing such pain on top of it.

Picture: happy tears.However, I blinked a few times and began to read the first three lines perfectly. Dr. Maguire was completely taken aback by this and he eagerly asked “Want to read more?” “Yes!” I said, as I was eager too and wanted to see just how far it would go. I read the next slide and then another! My heart was racing so fast, I couldn’t believe it, I had just gotten surgery the day before! How was this happening?! I was so happy that, for a moment, I didn’t care about the pain!

That’s when Dr. Maguire had said something that I’ll forever remember, “Hooah!” (a US military expression of approval) and then he said, “I guess, you’re just one of those people of ‘no pain, no gain’. You’re doing better than usually expected of most patients. Good job.” His statement was so very profound, as I took a moment to think to myself, “Yes, that’s true. It’s rare that any triumphs in my life is gained without struggle. My life has always been that way, I’m not sure why, but it has. Why would this situation be any different?”

I returned back to the hotel for my last night, before my sister, roommate, and I would make the trip back home through an ongoing blizzard. The triumph of the day was quickly forgotten, as I felt pain and misery. I was so very tired and wishing to sleep, but only able to have two hours at the most, before I sat bolt upright in my nice hotel bed in serious pain. I felt so miserable and wanted to weep, but I was too afraid to do so, out of fear of causing complications to my new eye.

I would hold back tears and have a “stiff upper lip” for the next three weeks, until my next Mayo visit. I was asked to read the eye chart again, however my implant was more “settled in” and adjusting itself. I didn’t read the chart badly, but not as extraordinary as I had done before. When the doctor and his assistant left the room for the moment, I turned to my sister and warbled, “Maybe [my transplant] isn’t working anymore… Maybe it’s rejecting itself…”

Tears welled up in my eyes and I cried for a moment, my first cry in three weeks. I quickly wiped away my tears and gathered myself, when I heard my doctor and assistant traveling back to the exam room. I never want to make a scene and often hold a “brave face” in public. Dr. Maguire assured me that everything was fine and that I was still doing very well. I was a bit doubtful, because of the eye chart test. And then my life of returned sight began…

It started when I looked into my bathroom mirror, as I do every morning while brushing my teeth. I noticed that I have marks on my face (age lines), right under my eyes. It was startling and I wondered, “Had I always had those?” Next, I noticed that my hands seemed a bit “vein-y” and the tips of my fingers are bright red. I was confused and worried that my body was somehow sickly.

Picture: confused anime girl.I shared these concerns with my sister and she smirked, “Yeah, your fingers have always been really red and you’ve always had those lines under your eyes.” I then realized that the last time I was able to see myself clearly, not as a blur, was in my early twenties. After the surgery, I was observing myself as an older adult in my mid-thirties for the very first time. It was scary, sad, exciting, and disturbing all at the same time. I had aged and wasn’t able to see that before.

For three years, I was accustomed to having extra pain in my arms or elbows, from running into the door frame or doorknob of any room I entered or exited, because my depth perception was off by much. Suddenly, I didn’t have that pain anymore and can enter/exit doors just fine.

For two years, I would cling in great fear to banisters of staircases, as I had a habit of tumbling down stairs. This death-grip had saved me on a few occasions, when I did tumbled and was able to catch myself quickly, only facing the embarrassment of two small dogs (belonging to my sister and roommate) as they peered at me with surprise that I had fallen. During those moments, I was relieved that my sister and roommate was not home to witness it, but at the same time I felt horrified that I was home alone. Had I tumbled all the way down and was injured, I would have no one to call for emergency help.

Post surgery, I now dance and skip down the stairwells in a silly way, that I use to do in my teen years. I haven’t stumbled down the stairs not once yet, since February. ^_^

Within the first weeks of April, my sister bought home a Time Magazine special addition of “A Year In Space – Inside Scott Kelly’s Historic Mission – Is Travel to Mars Next?”. She hesitated to purchase it, as the price for this particular issue is $15.00 (USD), but then she thought to herself, “Dani could read this magazine too. I’ll share it with her.” I will admit that I completely hogged the magazine for a day and read the majority of it.

I then realized, with such satisfaction, “I’m READING!” Before my corneal transplant, this was not possible at all. I had trouble reading huge font and was relying heavily on a screen reader online, but now I am able to read standard magazine and book print, without glasses. I didn’t finish the last two articles of the magazine yet, as I stopped to shout about the fact that I was reading again, on Facebook. I enjoyed the “likes” that I had received from my small circle on that site.

On Saturday, this week in April, I visited my local eye care center to fill my new prescription for eyeglasses. On my last visit to Mayo (in March. I will return to Mayo in the summer, to get the stitches around my transplant removed.), Dr. Maguire gave me a script-to-go for new eyeglasses, as my status within my left eye has changed from “legally blind” to “nearsighted”. I’ve always been nearsighted and dealt with extreme astigmatism, since age seven or eight. Keratoconus is a separate and more devastating eye disease that occurred in my early twenties.

In other words, I’m use to wearing glasses in order to see 100% correctly, but I was NOT use to living as visually impaired as I had became over the last decade. My old glasses did not help my impairment in the last four years before surgery, not at all. However, I had continued to wear my old glasses out of habit, and when they fell apart from old age it didn’t make a difference within my vision to not wear them pre-surgery. It’s a very big deal to me, that I am able to have a new eyeglass prescription for my left eye, that my eye has been “reset” back to my familiar eye health of my youth. I am happy that my new glasses will not be just a sentimental accessory, like my old ones were.

Picture: Your Lie In April - Kaori

Every day, I see things that I’ve haven’t seen before or I’m re-experiencing the forgotten details of what something actually looked like before my years of blindness. Street curbs are no longer a threat to me, but is now a fun thing that I like to hop up or down from. I seem to smile more and feel a lot more brave, whenever I leave my house and travel around Minnesota. I have more confidence in myself, because I can now see. Suddenly, my entire world seems a lot more colorful…  at least in my left eye. ^_^

I have been asked before, plenty of times, “When will you have surgery for the right eye?” Well, technically, I could have a transplant in my right eye in about four months from now. The policy is that keratoplasty is preformed one eye at a time, with a six month waiting period in between each surgery. The problem is, my surgery for one eye had cost over twenty-thousand dollars, and my insurance will NOT pay for it twice! I was very fortunate that my insurance approved it for my left eye (ahem… actually my sister and I had to fight hard for that right, and forced them to approve it, but lets not split hairs now! Water under the bridge and all that! ^w^).

Unless I win the lottery or become a famous writer overnight, a second surgery is out of the question for now. This is all that I will get and I better make it count! I’m honestly so very grateful for what I do have, I’m over the moon about it. It’s such an extraordinary feeling, when I come across a task that requires sight and I can do that task. I can see it and I can read it. I wasn’t able to claim such things for years, but now I can!

I’m very glad that I didn’t give up, even though plenty of times I felt like I wanted to.

As always, thanks for reading! Here’s a fun song that I wish to share: PIXL – Sadbot. I don’t think this song is “sad” at all, it’s so very bouncy and makes me dance! What do you think? Have a great week, everyone! ^o^v

-D

My Daily Life v.2!

Picture: Anime girl writingI’ve written a post like this before, a long time ago, but I’m in the mood to share an updated version about my daily life. I’m inspired to share, because I’ve noticed how easy it is for everyone to forget that behind every comment, post, and article there is a real human being behind the content shared online. It’s not just a faceless algorithm, but people, Soylent Green! I’m very much human. ^_^

My typical day starts off with stumbling out of bed (at midnight – five a.m.) and down the hall to the bathroom. Don’t worry, I’m not sick or anything, it just takes a while for my limbs and brain to fully wake up. I then return back to my room, set up my laptop, log into my email account, and reply to any emails I’ve gotten from acquaintances overnight. Next, I check out the “Japanese Word Of The Day”, still hanging onto the quest of learning the language. “Ki” means “tree” in Japanese. Are you impressed yet? ^w^

I enjoy a video from Good Mythical Morning, while eating breakfast. And, because I’m drinking less coffee these days, I watch a video from Jacksepticeye to give me that extra pep in my step. Caution: Be sure that your volume is not way up for Jack’s videos… it will result in an ear bleed! I’ve forgotten to turn down my volume before, mistakes were made!!!

After that, I choose one of my music playlists and spend three hours writing a manuscript of some sort, take a break to watch another YouTube video, write my manuscript for another couple of hours, take a break to do chores (laundry or whatnot), write my manuscript for more hours, take a break for a meal and chatter with my sister, write my manuscript, study science and math, then sleep. This is my usual weekday.

On the weekends, I tend to either binge on some Netflix series, write and code my little attempts of a video game, write/delete drafts for my blog here, spend massive hours enjoying The Sims 4 or another video game, visit my favorite hair salon, listen to StarTalk Radio, or sleep for an insane amount of hours (up to ten hours sometimes). These activities tend to vary, it depends heavily on my mood for that weekend, but basically that’s my days to goof off and do whatever the hell I want to.

My daily schedule tends to stay the same, is interrupted when I must leave the house for post-op eye care, usual medical check-ups (I keep my flu-shot updated!), and therapy sessions every other week. I always falter when people ask me the question of “Are you doing anything fun or special today?”, because I’m not sure if they would consider my predictable life as anything fun or special at all. However, I do like my life, except for one tiny complaint….

I think I would be a bit happier, if I had close friends and a sense of community where I could belong to. In other words, a social life of some kind and a sense of “home”. I don’t mean something huge and grand, like a large group of friends, endless parties, and so on. I would like a few friends that I can connect with, maybe a love interest, and some place in this world where I could belong to.

Picture: anime girl in class.I’m currently in the process of working on that, with my therapist, as I’m highly socially awkward and lacking the skills on how to make friends or to how to socialize in general. Outside of the settings of school or work, it’s pretty challenging for someone that’s my age to do (Ech… I’m age 35… I hate admitting that!). So, I look forward to the possibility of returning back to an offline school setting someday. Please wish me luck… I’m going to need it! ;^_^>

I am grateful, however, that I’ve come as far as I have in finding my happiness in life. I live in a safe and peaceful neighborhood, in a town that I absolutely adore, have new vision in my left eye, have found new strengths within myself, and have a pretty enjoyable daily life. So, I don’t want to sound too greedy, with my wish for a social life too. However, feeling lonely all the time totally sucks rocks!

Anyhoo… here’s a song that I want to share for today: Go Solo (Niklas Ibach Remix). Thanks for reading, as always, dear readers! And I wish everyone a great week! ^o^v

-D

Fighting Blindness!

Picture: Anime girl warrior.I want to be clear, I do not wish for pity nor is this a post about self-pity, but one of hope and determination! I wish to share something really cool for those who may be suffering from visual impairment at this moment.

To start off, recently I have been experiencing a painful change with my vision. It’s becoming increasingly hard for me to read and write, in spite of the fact that I have my web fonts set on a large setting. The issue is, although my browser is set to large fonts, parts of certain websites and blogs will not adhere to such settings.

For a while now, I’ve been unable to read certain blogs of others I follow, because the font is just too small and impossible for my eyes. I’ve been unable to enjoy YouTube comments nor the comments on other sites.

And even though my blog editor does adhere to the font changes, my actual posts are beyond my reading most of the time. Not only that, I am unable to see the ruled lines on my notebook paper and taking science notes has been difficult, to say the least.

Picture: tamayura.So, for a few weeks I have felt a little depressed about it. However, the good news is that I do have a Mayo Clinic appointment for the end of December! I got a letter from them, some weeks ago, and I felt so very nervous as my sister read it for me.

I was so use to letters being rejection ones and I feared that the Mayo Clinic was notifying me with the standard, “Thank you for submitting your eyes for review. However, we’re sorry to inform that your eyes are not marketable at this time…”

I know, that’s silly to worry about, but it didn’t stop me from hunching my shoulders in anxiety and ask my sister timidly, “What does it say?” Of course I “got in” and I began to cheer over the good news! I made it into Hogwarts! I’m a Wizard, Harry! ^_^v

My therapist made the remark that perhaps my Christmas gift this year will be the gift of sight, That’s a wonderful thought, as it would be the best gift on the planet and the best Christmas for me!

Even though I have an abundance of hope now, I still felt a lot bummed about my lack of reading ability online lately. However, it’s just like me to be stubborn and search for another solution…

Picture: Sebastian Michalis.As I type this, I’m hearing a robotic UK male voice, reading back what I’ve typed. He reads my blogs for me and any website I wish him to, by the click of a mouse.

I found this reading program, for the visually impaired,  free for the browser Google Chrome, it’s called: ChromeVox. It’s not perfect, but it allows me to enjoy websites again. I wanted to share this link for those who may really need it or for the curious.

There are a list of voices to choose from, but I personally chose the “UK English Male”, because I am sure that I won’t become bored or annoyed with his voice too soon. I’m considering giving him a name, for silliness sake. Hmm… Maybe I’ll call him Rupert! I don’t know why I like that name so much. =p

Actually, now that I’ve spent Sunday testing out the program on my blog, the blogs I follow, YouTube comments, and any other site I could think of, I feel a lot better again. I feel less isolated from the web now.

I am constantly fighting my eye disease and I’m not making it easy for it to bring me down. It’s a crappy situation, but I shall persevere. It’s just the sort of person I am, is all.

On Thursday, I will celebrate my 35th birthday… whew. I’m getting old. Anyway, I look forward to celebrating another year of life, with my family. I may be silent on this particular blog for a short while, but don’t worry, I’ll be back!

In the meanwhile, here’s a song-hug for my dear readers: Somewhere Over The Rainbow / What A Wonderful World.

Thanks for reading, as always! ^_^v

-D

Blind Adjustments

Picture: BlindfoldedGirl.It’s been a while, since I’ve last mentioned about my eye disease, Keratoconus. Here’s a little update about it, with a side of a little hope. ^_^v

In previous posts, I had argued about the FDA’s decision to not approve a procedure called “Corneal Cross-Linking” (CXL) and after some little research I quickly became aware as to why it’s not approved in the US. One of the videos that shook me the most was this one: My Life With Keratoconus (truearabhustla). The amount of pain described by this gentleman and other comments from those who went through the procedure was horrifying, to say the least.

The video concluded that even with the surgery, a patient must still wear special contacts called “RGP Lenses”, as the CXL procedure only stops the condition from getting worse, but doesn’t correct vision damage. The lenses are a lot expensive and require a lot of invested time, as it’s usual for a patient to have to return for adjustments at least three times before the correct prescription is discovered.

Of course, those who perform and study CXL make claims that the surgery can improve the eyesight of their patients without RGP lenses or any visual aid, but in my research within the testimonies of many who’ve had the surgery, it seems that CXL either has no change on their eyesight or causes vision to become worse in some cases. Hmm… u_u

My vision is so very important to me, as a writer, and this new data about CXL is less than encouraging. In fact, I’ve made up my mind that I DON’T want the procedure, and perhaps the FDA is correct in refusing to approve it for the US.

Picture: anime scientist.There’s still so much about Keratoconus that the scientists and doctors do not understand yet. Genetic research about the disease is still ongoing, which I actively partake in the 23AndMe questionnaires about eye diseases, for their genetic research projects. More treatments are being discovered and developed still.

So, I took a moment to do more research on another option. I came across a procedure called “Intact Corneal Implants”, which has been FDA approve since 1998. I browsed many testimonials from patients who’ve had the procedure and it’s not painful, recovery time is quick.

Best of all, its rate of vision correction is more promising with instant results. Most patients were able to see a lot better a few hours after the surgery. Some gained 20/20 vision, in general most patients gained better vision that required either soft contacts or low prescription glasses to correct further.

I wonder why my eye doctor failed to mention this option, as he only discussed RGP Lenses and CXL, both are not covered by my insurance so it meant money from my pocket that I do not have. And when I explained this to him, he pretty much said that he couldn’t do anything for me and to leave the premises until I had the money.

Obviously, he doesn’t know about Intact Surgery, so I searched around my state of MN until I found a place that could better suit my needs. The Mayo Clinic happens to specialize in Keratoconus and Intact surgery specifically. I’m waiting to hear word from my GP, as I need a referral to get an appointment with Mayo.

I’m not sure if my insurance will cover the cost for Intact Surgery, but it’s the exact same cost as CXL, and I almost have enough money saved for one eye. I’ll ask if it’s possible for them to just care for the one eye, although I won’t have the last $500 saved until sometime next year, due to upcoming bills and holiday season.

Perhaps there is a payment plan or maybe my insurance will cover the costs, I do not know and will not find out until I meet with a doctor at Mayo. Still, I can’t help but to feel hopeful. ^_^

Picture: Cowboy Bebop Spike.If I must choose one eye to save next year, that’s okay, because one eye is better than none. And… I could quote the badass Spike Spiegel (Cowboy Bebop), “Look at my eyes, Faye. One of them is a fake because I lost it in an accident. Since then, I’ve been seeing the past in one eye and the present in the other. So, I thought I could only see patches of reality, never the whole picture.”

In the meanwhile…. my eyesight is getting worse in more noticeable ways that I can’t ignore or deny. It’s getting harder for me to read the labels and instructions on packages while cooking. Last month, I stood with a microwave meal in the middle of my kitchen, so hungry and unable to read how long I was to set the timer.

I cried a bit, but calmed myself enough to squint very hard. It took several minutes, before I could read that I was to set the timer on four minutes, remove the plastic cover, stir, then place the meal in the microwave for two more minutes. I know the instructions by heart now and skip reading the back for that particular meal. This is only a band-aid to a growing issue.

So, my therapist directed me to a program for the blind, to learn how to read braille. This service will come into my home and label everything for me in braille, including the stove handles, so I can know when it’s on/off without having to guess.

Hopefully, I will get training with a seeing cane as well, as the front steps and any curbside are my known enemies. It’s getting too dangerous for me to wander the outside world, without the risk of breaking my ankle or falling down stairs.

I’m not too proud to admit that I need help. Not anymore. I want to continue to be independent and such services for the visually impaired and blind will make sure I can continue to live my life the way I want to.

Picture: Shigure-Sohma.And, if there is a group for others who are struggling with adjusting with their blindness, I won’t hesitate to join. It does get tiresome when I try to speak with others about my troubles and they snort, “Well you’re not blind-blind. So, there’s nothing to be upset about.”

It’s highly annoying when some people I chat with want to believe that my vision impairment is somehow no different than their own minor vision issues like astigmatism. I miss my years, when my only vision issue was solved with a new pair of new glasses. If I could somehow get rid of my eye disease and go back to that point of my life, I would do so in a heartbeat. Those were easier days, when I had the diagnosis of astigmatism.

I’m not walking into walls for fun, nor am I having other embarrassing vision accidents just for chuckles. I can’t see, people! It can feel a lot depressing, isolating, scary, and heartbreaking at times. I think it would be helpful for me to speak with others with the same frustrations, who can understand what I’m going through or facing.

The truth is, without any surgery whatsoever, I will go “blind-blind” someday. It’s already starting in that direction, month by month, year by year. It’s uncertain if I’ll become blind in three years or next year, as no one can give me a definite answer about that, other than it will happen.

Picture: anime girl hope.However… I have a bit of hope. I’m keeping my fingers crossed about my Mayo visit. And perhaps I can adjust my life to this new change, to learn how to live with my blindness for now. I will update this subject, sometime later, as I try this new path.

Thanks for reading! ^_^v

-D