My Top Ten Questions for the Nystagmus Network Team

I am in several sight loss and Nystagmus support groups. One of those groups, called the Nystagmus Network helps support people who have Nystagmus and they also fund research. Each week they get people in the group talking by bringing up a topic related to the condition. Today I’m turning the tables! Here are my top ten questions for the Nystagmus scientists and Trustee’s.

  1. Which is better cake or a biscuit?
  2. Which is better coffee or tea?
  3. Have you ever thought about finding out if Non-24 is linked to Nystagmus? I see so many posts about people having a hard time sleeping. I’m one of those people!
  4. Which season is your favorite?
  5. What does it take to become a medical scientist to study Nystagmus? I mean besides those really awesome white coats. 😊
  6. If you had 1,000 pounds/dollars what would you do with it?
  7. Which is better coke or Pepsi?
  8. What is one piece of advice you would give to new parents whose child has Nystagmus?
  9. Which animal is better dog or cat?
  10. When do you have the most energy: Day or night?

 

If you like this blog post and want to see another post like this or have a vision related topic you would like me to cover please email me at: Amanda@amandagene.com

Disclaimer: This post is not sponsored in anyway.

 

2020: More Courage, Self-control and Joy-January Edition

What can one say about January? It seemed to slowly drag by then the days and weeks would fly by. I have to say that this month has been full of lots of disappointments and a lot of lessons. First, my friend reported back that my hard drive that I sent off could not be recovered. I lost almost all of my photos, and most of my documents. I have to say that I have found the courage to continue to write despite this drawback. I have also found joy in the fact that my editor and my email had some of the documents that I really needed. When I look back at it all I didn’t really lost everything. I just have to accept the loss and move forward. For me as a writer this takes a lot of courage.

On top of that I finally got the answer that I have been waiting to hear from Vocational Rehabilitation. Before I explain the answer, I am going to give you all the details of what has been going on behind the scenes. In October during my monthly check in I mentioned that my laptop was running Windows 7 and that it was getting slow. Since in January Windows 7 would no longer be supported I wanted to find out what kind of technology assistance I would be getting.  I scheduled a meeting in November where my caseworker and I called several different companies to find out what our options were. Most of the companies agreed that my current software, ZoomText and Kurzweil, was outdated and it needed to be updated. We found out that my current laptop was probably not going to be able to hold all the software I would need and be able to run correctly. After this meeting my caseworker told me that she would ask a technology rehabilitation engineer to look at my current software and make a recommendation. On December 19th the engineer came and looked at my software and told me that he recommended a new laptop with Windows 10 and updated versions of office, ZoomText, and Kurzweil 3000. We went over my needs. He then went and spoke with my caseworker who said he had to file a report. After the holidays and a bunch of follow up questions I got an email from my caseworker with the report. The news was not what I wanted to hear. The engineer said that my current laptop just needs new ram and new software updates. I am very disappointed in this since I have concerns about my computer continuing to crash and cause me problems. I am currently waiting to hear back about some follow up questions before my case moves forward.  I have to say that I feel that I am lagging behind on my work. I am just doing the best that I can at the moment.

 

It took a lot of self-control for me not to get angry at this. I called my two best friends and told them what is going on. They both reminded me that I should have joy that I am getting the help that I need. They are right. Technology for people with low vision can be costly. Right now I am lucky to not have to pay for anything.

This month has really been a season of waiting on answers. All I know is I have to trust God with my life and remember to have courage, have self-control and find joy in all of the things that life has to offer.

Interview with DJ Hey (Guest Post #21)

Hi everyone, today’s guest post is from DJ Hey. I met her on Twitter. Be sure to check her social media accounts.

  1. What is your name (or blog/channel name)? My name is Heather Nyblade, and I’m 31 years-old.
  2. Who has inspired you the most in life? My family and friends have inspired and continue to motivate me to follow my dream and live the life I deserve to live.
  3. Who has inspired you for your blog or YouTube channel? My vision teacher I had in high school, Martha Castigilla, inspired me to start my YouTube channel and suggested making a video about how people should and shouldn’t treat the blind.
  4. Besides writing or making YouTube videos what do you like to do in your spare time? I love doing my trance music mix called “High Energy Tunes,” which can be heard once a month on laut.fm/liftedtrancemusicradio and my official SoundCloud page. I also love performing at clubs and venues, since my goal is to travel the world by performing at the big-name events.
  5. Name your best quality? My best qualities are what the trance music community is all about, which is peace, love, unity, and respect (PLUR.)
  6. If you could interview anyone living or dead who would it be and why? It’d be my favorite DJ, Ferry Corsten, from the Netherlands. Because he  he inspired me to pursue my own career as a DJ, specifically at the same events he and other trance artists perform at. Such as Tomorrowland in Belgium, Electric Daisy Carnival (EDC) in Las Vegas, Dreamstate in Southern California, and Luminosity in the Netherlands. After meeting him in 2013 and enjoying his set at the Intervention Pool Party, I was instantly hooked.
  7. What is your college major/minor? I have a high school diploma.
  8. Why did you choose the title of your blog or YouTube Channel? The title of my YouTube channel is DJHeyOfficial because DJ Hey is my DJ name, and the official part is to let people know this is my real YouTube channel.
  9. Where do you see yourself in five years? I want to see myself performing at trance music events all over California and out of state before getting booked over in Europe.
  10. What is the name/cause of your visual impairment (or other disabilities that you may have)? I was born three months prematurely and was diagnosed with retinopathy of prematurity )ROP), which is what caused me to be totally blind.
  11.  How does your visual impairment (or other disabilities that you may have) effect you on a daily basis? I don’t look at my blindness in a negative way, mainly because of what I mentioned earlier about coming from a loving family.
  12. What do other people feel about your visual impairment (or other disability that you may have)? I’ve had situations where people have given me the “Oh, I feel so sorry for you because you’re blind” comment or would automatically assume it must be really hard for me to do something, just because I can’t see. But everyone I’ve met through my shows and social media have been really impressed with what I can do. This is why I’m extremely thankful for them being there to love, support, and appreciate me for who I am. Because the trance community has been all about being there for each other as a family.
  13. If you had to give one piece of advice to others about having a visual impairment (or other disability that you may have What would that be? Don’t  let it stop them from doing what they love or living the life they want to live.

14. Where can other people find you on social media? (Please list and provide the links.)

For anyone who’d like to check out my socials and follow me, they can be found at linktr.ee/DJHeyOfficial.
DJ Hey
Photo of DJ Hey. Photo credit goes to DJ Hey.

 

 

My Mental Health Journey: Let’s talk about Depression

I remember going through Depression after my mother died by the time my senior year of high school came around, I began to feel better.  However, when I entered college, I started to get wave after wave of depression to happiness back to depression.

I didn’t know that I was experiencing a specific kind of depression known as, Persistent Depressive Disorder which can also be called Dystymia.

According to National Institute of Mental Health,  There can be many reasons a person can have depression.  Three most common factors are: Personal or family history, having issues in life that are major such as a traumatic event or a major stress period, and having other medical issues that are either physical or can be an effect to medicines.

I have a both personal connection with depression myself and I know family members that have a history of depression. I have had depression episodes such as losing my mother, dog and grandma. I have had major stress issues when I was preparing to continue my education after high school.

There can be many different physical and mental signs that a person can experience when they have depression. For example, according to Anxiety and Depression Association of America, some of the symptoms may includes but are not limited to: “…Persistent sad, anxious or “empty” mood, feelings of guilt, worthlessness, helplessness and loss of interest or pleasure in hobbies and activities, including sex…”

When I go through a depression time period, I notice that I lack energy; I feel a lack of hope; I lose interest in activities I enjoy doing such as writing and reading and I tend to either under or over sleep.

In 2015, I was in a very deep depressive episode.  I had to put my dog Noodles to sleep. I was struggling with my temporary job. And in addition to that, I was providing part time care to my grandma who was battling Alzheimer’s Disease.

My family and friends noticed that I was struggling with my mental health.  They kept nagging me to see a therapist. In October of 2015, one afternoon, I checked myself into outpatient therapy.

I was very resistant to my therapy appointments at first. That was because I really didn’t know what being “normal” felt like. Over time my mood started to feel better.  My therapist suggested that I use some practical tips to help me when I got depressed, such as listening to music, reaching out to friends, exercising, etc. Now if I am ever in a depressive episode, I know how to cope with it.

Have you ever had problems with depression? Tell me in the comments below.

Disclaimer: If you are having problems with either your physical or mental health please seek professional medical care.

 

 

 

 

A follower Asked….

A Facebook friend and follower who has Nystagmus, asked me to offer some tips on how to manage Nystagmus while you are sick.

As always, I advise this friend and all my followers that If you are having any kind of medical or mental problems, please seek proper medical care.

Even though I am not a medical professional, and I am not offering any medical advice, I want to offer five tips that has helped me feel better when I have been sick. I hope that these tips answer this follower’s question.

  1. Admit that you are sick and that you need to rest.

We all lead busy lives and sometimes we just carry on with what we are doing. When you have a sever sickness, you need to admit that you are sick stay home. I had to convince myself of this during my high school days. I used to go into school just to take one test then go to the office to go and get checked out. This did not help me or school community.

  1. Drink plenty of fluids.

When I was a young child, I loved chicken broth and Sprite. This helped me with any sore throat that I may of had.

  1. Get some sleep! Sleep is so important with your health. Not only is it important when you’re sick, but also when you are well. When I am sick, I can feel my Nystagmus go even faster. My eyes hurt a lot more than normal. Therefore, when we take an extra nap, it really reduces our eye movements and sooth our achy eyes.
  2. Go to the doctor when needed.

This was an important lesson I had to learn as a teenager. When I was seventeen, I had a kidney infection. For one month before my diagnosis, I kept saying to myself, “You’re not sick, you just threw your back out during P.E.” That was a big lie. The pain made me cry and sent me to the Emergency Room. As a result, I received two bags of fluids to decrease my heartrate and blood pressure. I had to stay overnight. If I had gone to my general practitioner earlier I would not have had to go through all that.

  1. Don’t let stress make your immune system weak after you have made a full recovery.

People with Nystagmus know stress can increase their eye movements.  I missed three days school due to my kidney infection. As a result, I fell behind with my school work. This stressed me out! My stress increased even further when I learned that school policy only allowed me three days to get back on track with my work. I should have paced myself. I felt rushed because of this deadline, and increased my anxiety and stress levels which made me feel weaker after my recovery.

I am sure that there are many more tips that I could have offered. If you can think of something, that you would like to add tell me in the comments below.

Disclaimer: If you are experiencing any problems with your physical or mental health please seek proper medical care.

If you have a question you would like to ask me feel free to email me at: amanda@amandagene.com

Season Of Waiting

After last week’s post about my themes for this year, I found out that I am in a season of waiting. When I look at the long list of things that I am waiting for, it feels like the list is endless. For example, I am waiting for an important delivery, waiting on my state Vocational Rehabilitation Services to get me what I need, and waiting for answers to my prayers.

Because I wasn’t sure what to do while I am in this season of waiting, I begin to get worried and anxious. As a result, God lead me to YouTube, where I found a sermon by Sadie Robertson called “Don’t waste the waiting.” I usually do not watch Robertson; but this time, however, I watching her and connecting with it. In the video, Robertson talked about praising God while waiting for God to answer prayers. I connected with her sermon because I was praising God while waiting for an outcome of a meeting that I really needed. I’m excited to say that God answered my prayer that day.

Meanwhile, as I am praying and praising God in this season of waiting, I am also listening for his voice. The Lord has continued to tell me that I need to let go of all the hurtful past that I have held onto for so long. For me letting go is one of the hardest things to do. I often find myself crying at night before bedtime because of anxiety. I know that letting go of this hurtful past can help me find more joy and peace and lessen my anxiety.

I have often felt lost with what I am supposed to do with my life. To help give myself some direction, I have created a box of goals. My goals are simple: Mail out a few things, get my passport, and continue to work on my business plan. If I continue developing my business plan, I will soon be able to graduate from my state’s Vocational Rehabilitation Program, which I have been affiliated with since 2006.

Have you ever been in a season of waiting? What did you do during this time? Tell me in the comments below.

2020: More Courage, Self-control, and Joy

In 2019, I worked on movement, patience, and positivity. While I was growing in those lessons God pointed out some other very important characteristics that I need to work on. Now in 2020 I’ve decided to bring these issues to light, examine them, and grow in them. My three pillars this year are: Courage, Self-Control, and Joy.

My first pillar is courage. For those of you who don’t know I often lack confidence which is a byproduct of being controlled by anxiety. I often worry about doing or saying the wrong thing and what other’s think of me. As a result, I have missed out on a lot of great opportunities. This year I have decided to build up my self-confidence which I believe starts with showing action by having courage to do things. For example, I have a phobia of going to the doctor because of previous bad experiences. When I was seventeen, for instance, I went to the Emergency Room with severe stomach and back pain. Initially, even thought I was a virgin, the doctor still believed that I was pregnant. After the pregnancy test came back negative, the doctor discovered the cause of my pain was from a kidney infection. Nevertheless, the doctor said, “I still think you’re a slut!” As a result, I have not trusted doctor very much since then.  Therefore, it’s time for me to muster some courage and make a doctor’s appointment.  In fact, the Bible commands us, “…Be strong and courageous!” (Joshua 1:9).

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Bring on 2020…

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My second pillar is self-control. Self-control is one of the fruit of the spirit. (Galatians 5:23). For those of you who don’t know I have quite a temper. Last year, for example, my temper got the better of me when I threw my Iphone 8 on the floor and smashed the screen. This mistake will cost me $400 plus dollars to fix. Therefore, God showed me that I need to improve my self-control.   He relived to me, in his word, “A person without self-control is as defenseless as a city with broken-down walls” (Proverbs 25:28).  I am eager to learn to grow in this very important fruit of the spirit.

My last pillar is Joy. But my joy often gets robed because I tend to focus on my problems rather than their solutions. For example, last year I fell into a depression when my hard drive crashed, and I thought that all my work was lost. Then I found a spark of Joy! God gave me a potential solution when a friend offered to try and recover my data.  It is in the process of trying to be recovered as of this writing. God has shown me the recipe for Joyful living, in his word: “Always be Joyful. Keep on praying. No matter, what happens, always be thankful, for this is God’s will for you who belong to Christ Jesus” (1 Thessalonians 5:11).  I feel that if I find both earthly and spiritual joy, I will feel happier and more relaxed.

I pray that you guys will see me grow in these things, and that you will be able to benefit from me sharing my journey with you. What are some of your goals this year? Tell me down in the comments below.