Happy Nystagmus Awareness Day!

Nystagmus Awareness Day (2020)

Today is Nystagmus Awareness Day! Nystagmus is the eye condition that I was born with. If you have not heard of the condition know that it is a rare condition that affects, according to Nystagmus Network “1 in 1000 people have Nystagmus.”  Nystagmus is an eye condition where the eye constantly moves. This pattern can be in an a vertical, Horizontal, or circular fashion.  For me, I have circular Nystagmus.  According to the Nystagmus Network, there are two main types of Nystagmus. The first one is called Infantile Nystagmus or congenital. This is the type of Nystagmus I have. That means a person is born with it. The second type is called Acquired Nystagmus. This can affect people later in life and can have different causes or sometimes no known cause at all. Nystagmus can effect’s everyone’s life differently. It all depends on the type of Nystagmus and the severity of it.

As a young girl I had to use large print books to be able to read my schoolwork. I had a teacher of the visually impaired come in a few times a week to provide one on one support. As I got older, I found out I would never be able to drive. My large print books have been replaced by assistive technology. As a young teenager the adults around me did not know what the future had in store for me. I felt sad and I thought I had a bleak future. I thought that I was the only one who had Nystagmus. I had not met anyone else who had the condition. I had so many questions about my future. I had low confidence.  I also had a lack of peace because I did not know that there was support out there.

In 2011, I was searching through Facebook and I found the Nystagmus Network. I found out that I was not the only one who had this condition and I was not the only one who felt overwhelmed. I began to ask questions about how I could better live with Nystagmus. Now I have lots of friends, from all over the world, and I have a place where I can ask for advice and support.

I have hope too. I know that the Nystagmus Network and other medical professionals are working on finding better treatment and hopefully a cure one day.

Because of the support I have received I no longer feel like Nystagmus is a roadblock in my life. I feel at peace with the fact that I have this condition. I have learned that everyone who has Nystagmus has talents and that even though you may need to modify your career goal you can live out an amazing life. I am now working on building my career as a freelance journalist and an advocate for those who have Nystagmus.

The support I can get daily cannot be given without the help from the public.

Be sure to visit the Nystagmus Network’s site to learn more about Nystagmus and donate today.

Also, be sure to share this post to help spread awareness on this International and National Nystagmus Awareness Day. 😊

Please note: This post was not sponsored in anyway. I just love the Charity Nystagmus Network. 🙂

 

2020: More Courage, Self-Control and Joy-May Edition

Have you ever stopped and just listened to what God is saying to you? That is what I’ve been doing for the month of May.

When it comes to courage, I had to show courage when I had to go back to my orthodontist to find out about treatment for my shifted teeth. I found out that I had to start wearing my retainers full time to try to shift my teeth back to their original position. I will find out, in a few weeks, if I need surgery or not. Ever since that visit to my orthodontist I have been in a body dysmorphic disorder flare.  I find myself looking in the mirror judging my appearance wondering if my teeth have moved even just the slightest amount. That is when I hear God refer me back to Psalm 139:11, “Thank you for making me so wonderfully complex! Your workmanship is marvelous—and how well I know it.” God also has taught me that even though others may judge my appearance, it says in (1 Samuel 16:7),   … “Don’t judge by his appearance or height, for I have rejected him. The Lord doesn’t make decisions the way you do! People judge by outward appearance, but the Lord looks at a person’s thoughts and intention.”  God has shown me that I can finally let go of my body dysmorphic disorder (BDD). I have now found peace with my disorder. I will let you know more about my Orthodontic treatment when I find out more information.

When it comes to self-control, I had to learn to wait for things to happen in my life. For example, I have set a few Financial goals, such as my personal savings. I must slowly put money away to reach them. I will make it though. God has also taught me to continue to have a positive mindset. Right now, I am slowly getting things back together since my hard drive crashed last November. I am working on my book. My goal is to have it ready to present to the Vocational Rehabilitation board in August. It says in Jeremiah 29:11, “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

Joy, in the light of the virus I have started to slow down and learned to enjoy what life has to offer. This month, my grandpa celebrated his 84th birthday. We went out to dinner to one of his favorite restaurants. We both had a fish basket. It was tasty. During my Bible study this month God showed me that I can have emotional peace and I do not have to dwell on the tough stuff. He has showed me that even though I am considered to be labeled as living in “Poverty” I can enjoy being his child and that I can enjoy the little things such as enjoying a nice scent of lavender bubble bath. I am starting to see God’s love around me. All I have to do is stop, listen and look around to find it.

How was May for you? Tell me in the comments below.

Do you feel your child has anxiety disorder? Here’s what to do by Ralph Macey (Guest Article)

Nothing is more painful for a parent than to see his/her child suffering mentally or physically. It’s easier for parents to be on the alert mode when a child is suffering physically. A wound on the knee is easily visible and parents can give medications immediately. But what about the wound in the mind? How can a parent determine that his/her child is suffering from an anxiety disorder?

 

Well, there are a few tell-tale signs to know if your child is suffering from an anxiety disorder. Here are a few of them.

 

  1. Inability to mix with school friends
  2. Too much perfectionism
  3. Problem in focusing on studies
  4. Lack of interest in interacting with family members
  5. A tendency to avoid various activities and situations
  6. Not willing to get out of bed and do all the daily activities
  7. Shaky hands, headache, insomnia, breathlessness, overeating or not eating foods, stomach upset

 

If you see that most of these signs are present in your child, this means that he/she is suffering from an anxiety disorder. What should you do in this situation as a responsible parent? Should you leave it on time and hope your child will become normal again? Should you take some proactive steps to help your child get better? What should you actually do?

 

Well, if your child’s life is getting affected due to anxiety disorder, then you should obviously take steps to get him or her well as soon as possible.

 

Here are a few steps you can take to help your child recover and lead a healthy life.

 

  1. Consult the primary care provider: Take your child to the primary care provider first. He can check all the symptoms and find out various ways to treat children with an anxiety disorder.

 

If your child has a mild anxiety disorder, then, in that case, the primary care provider may prescribe a few medicines and counsel him/her for a short time. Let’s say the primary care provider may take 6-8 counseling sessions. However, if your child has an acute anxiety disorder and PTSD, then he may refer your child to a good psychiatrist in your area. The psychiatrist can give long-term counseling and medicines to your child and make him/her smile again.

 

  1. Initiate delightful conversations: Most kids with anxiety disorder prefer to lock themselves in a room. That’s very bad for their mental health. All the demons get a chance to create a hurricane in their mind.

 

No matter how busy you’re, try to spend quality time with your child, Sit with him and watch a movie in a theater. Initiate delightful conversations when both of you’re in the car. You have to let him shed his guard and open up about what’s bugging him. Don’t go straight to the topic. Rather, give him time to open up.

 

  1. Don’t avoid the trigger factors: Too much love and adjustments are not good for your child’s mental health. If you adjust too much for your kid and avoid the situations that create anxiety, then that would turn into a big problem in the future. Don’t avoid small situations that make your child anxious. This is because you can’t be there with your child 24*7.

 

For instance, if your child becomes anxious whenever someone invites him to a party and you politely decline the invitation to avoid problems, then that’s a wrong move. He would never learn how to mingle with people in a huge gathering. He can’t avoid all the parties all the time. So you’re doing him more harm than good.

 

Teach him the ways to overcome his fears. That’s the best way to help him overcome his anxiety issues.

 

  1. Don’t give junk foods: Many children suffering from an anxiety disorder love to eat junk foods. But these foods trigger anxiety. Don’t let your child eat chips, burgers, pizzas, etc. Encourage them to eat leafy vegetables, fruits, and healthy meals.

 

Conclusion

 

The biggest fear of people suffering from an anxiety disorder is that they want to control things that are uncontrollable. You have to teach your child to handle adversity. You have to make him understand that there are alternative solutions to various kinds of problems. For instance, if someone misses a train, he can take a cab.

 

Instill confidence in your child and help to build emotional intelligence. Teach him the various ways of figuring out a solution to a problem. Let your child go out and face the world.

 

As a parent, it’s normal to feel nervous when your child goes out alone. You may always worry about him. But will you be there with him throughout his life? Can he stay his entire life at home? This is not practically possible. So you have to let him go out and learn how to sort out problems on his own.

 

Interview with Laurie (Guest Post #24)

Hi everyone, Today’s blog post comes from my friend and fellow blogger, Laurie. Be sure to check out her blog and follow her on social media.

  1. What is your name? Laurie
  2. Age? 55
  3. What is the name/cause of your visual impairment (or other disability that you may have)? Mental health issues such as chronic depression and anxiety. Invisible illnesses such as Celiac and autoimmune diseases such as microscopic colitis, also sleep apnea,chronic fatigue syndrome and osteoarthritis among many dx.
  4. How does your visual impairment (or other disability that you may have) effect you on a daily basis? It makes it difficult to function on some days between the fatigue and pain. Brain fog can make keeping up with my blog a struggle. I look at others blogs and have a really hard time not judging mine but I am not going to give up.
  5. What do other people feel about your visual impairment (or other disability that you may have)? Because it is not visible to them it is hard to know or remember that I have a chronic battle that I struggle with daily. It gets frustrating at times.
  6. 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 it be? Don’t live your life based on what you think others think of you. Make sure you take care of you no matter what. We need to break the stigmas and show them that we are more than our dx. We are people with feelings and can live a full happy life in spite of our disease or disability.
  7. Who has inspired you the most in life and your blogging and or YouTube channel? My youtube channel inspiration was due to watching my daughter with her having fun with her animal channels. My blog is something I have always wanted to do but struggled with the confidence to really go for it. Then Ruth Soukup started using the “Do It Scared” motto and it keeps me going.
  8. Besides writing or making YouTube videos, what do you like to do in your spare time? I love to read. I don’t have a specific genre of book. I like many types. I also like to watch movies with family we sometimes have family craft nights too.
  9. Name a bad habit that you have? Emotional eating
  10. Name your best quality?   Empathetic
  11. If you could interview anyone living or dead who would it be and why? That is a tough question. Maybe Mother Theresa. She did so much good and I want to know how she did it all.
  12. What is your college major/Minor? Bachelors arts liberal studies with minor in early childrens services and minor in psychology
  13. What school (college or university) did you go to? UMA~ University of Maine at Aug
  14. What is the title of your blog or YouTube channel? SEEKING SERENITY AND HARMONY
    Laurie photo
    Photo provided by Laurie.

     

     

     

    1. When and why did you start your blog or YouTube channel?
  15. BLOGhttps://seekingserenityandharmony.comI dabbled with a few random blogs off and on but didn’t really get into it until early 2018. My goal is to spread awareness about mental health and invisible illness issues and stigma. I also have a strong interest in advocacy for children as I am watching the mental health rates in our youth rise instead of decline in the last several years. Youth are also showing signs of mental health issues at much younger ages now than ever before.

    YOUTUBE CHANNEL

    It started out as just a place that I posted some bird videos of my poultry so I could share them on Backyard Chickens where I am a member. I have utilized it some during It’s a Lovely Life’s Blogging Challenges but don’t utilize it as much as I should. I want to do a lot more videos this year and hopefully some much better quality ones. https://www.youtube.com/channel/UCRDPiiXB_K0NemU4cHy42qg?view_as=subscriber

  16. Where do you see yourself in five years? In 5 years I hope that I will have more time to write and focus on the projects I want to spend time working on. I would like to think that in 5 years I will have improved my health issues and not have such a daily struggle.
    1. Where can other people find you on Social media (Please list and provide links)
  17. https://www.instagram.com/seekingserenity2001/https://twitter.com/harmony2001https://www.pinterest.com/SeekingSerenityandHarmony/

    https://www.facebook.com/seekingserenityandharmony/

    https://www.facebook.com/SeekingSerenityandHarmonyHomestead/

How my eating disorder fed off my Body Dysmorphic Disorder (BDD) (Part 5)

As I looked into the mirror, in my university bathroom, one day, I noticed that I had several spots of acne. I closed my eyes and remembered, how my mother used to pop my pimples, and say, “Okay, Pizza face. Do not let me pop those pimples and let them get worse.”  Since I hit puberty, I had a bad complexion. My mother and I tried countless products from Clean and Clear to Oxy. None of them worked for me. Once I got my period my hormones made this worse. When my mother called me names it only hurt my self-confidence.  Then my mind drifted to my grandma’s words, “Your mother was so beautiful and had gorgeous skin. You did not get those skin problems from her. It must have come from your father’s side of the family.”

As I wiped sweat from my oily face, I decided to walk back over to the university health center to see if anything could be done about my complexion. That same day I explained to the nurse, “I need something to help clear up my face. I would like some recommendations that are over the counter since I don’t have insurance.” The nurse took a quick look at my face then asked, “Do they ever hurt or bleed?” I knotted yes. She quickly pulled out her prescription pad and said, “I know of this great kit that will help with that. Take this prescription and try it for two weeks then come back for a follow up.”

My mind drifted back to when I was a young 16-year-old. As I was sitting on the exam table, waiting for the doctor to come in to see about my eczema. My grandma reminded me, once again, about my mother’s beauty and how ugly I looked. She begged me to ask the doctor to help me clear up my complexion. At first, I did not want to ask the doctor, but then I caved. We tried three different medicines. The first one caused me to have black teeth. The cause of this was because I had an allergic reaction. The second medicine my grandma did not like because it took time to work and there was a smell to it. The third and final medicine looked like thick cake batter. So, after trying all three I told the doctor that I wanted to give up. Come to find out it was a wise choice because a few weeks later I lost my health insurance.

I hoped that this time the medicine, from the nurse at my university, would work. Two weeks later I returned to the nurse for my follow up appointment. “I couldn’t open the bottle. Because my hands were too weak because of my Cerebral Palsy.” I explained. “Amanda, next time ask the pharmacist to open it for you or put it into another container. Come back and see me in a month.”

I shook my head and left. I continued to try to apply the medicine like it was prescribed, but still I felt I was losing the battle.  The truth of the matter was I was tired of trying to fix the problem. Once I graduated from The University of West Florida my acne and the words of my family still was haunting me. It was not until years later that I found an over the counter product that worked. The more I use the product the more confident I felt. Now as I look into the bathroom mirror today and I think about the words of my family— Yeah, sometimes I still visit those memories, but I am learning to let them go and feel confident in my own skin.

How my eating disorder fed off my Body Dysmorphic Disorder (BDD) (Part 4)

“Amanda, time to get up and walk Noodles,” my Grandpa said as he awakened me one Saturday morning. I grumbled as I got out of bed and grabbed Noodles’s leash; I slipped into a pair of shorts and  threw  on a T-shirt.  Then, Noodles and I went for a walk.  The truth of the matter was  that both Noodles  and I were overweight. I hated taking Noodles for a walk in the hot Florida sun because my eyes suffered from photophobia due to my Nystagmus.

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Photo of Noodles and I lying in the grass.                Photo credit goes to Mrs. Karen

Despite this problem, I knew that Noodles and I needed to walk so our health wouldn’t worsen. Besides exercising, I also knew that our poor eating habits had to change. For example, not only did we needed to cut back on giving Noodles so many treats, but I also needed to stop eating so many cheeseburgers and French fries at the college cafeteria.  One of the reasons why I was overeating was due to the stress of college. As a result of my poor dietary habits, I could barely fit into my clothes, and my energy level decreased.

One weekend, while visiting my grandparents, I said to Grandpa, “I am struggling with picking out healthy food at the cafeteria. All I want to eat are cheeseburgers, fries and soda.”  My Grandpa, who had eaten lunch with me at the cafeteria before, said, “I remember they offer a salad bar there. Try to eat a salad with your lunch and dinner. Limit the number of times you get a cheeseburger meal and try to get out to go for a walk between classes.”

When I returned to college the following Monday, my friend suggested that we walk to church  to get some exercise. On our way there, to attend Bible study, she handed me an orange and said, “Here, I know you have been trying to change your diet. I brought you an orange to try.”  I tasted it, and even though I used to like oranges, this one did not appeal to me, just like most other healthy food.  After I threw the orange in the trash, my friend said, “Don’t worry we’ll find some kind of fruit you like.”

Eventually, I forced myself to try more fruit. But other than bananas, no other fruit appealed to me.

Over the next year, Noodles and I made a lot of progress with our diets and exercise routines and lost the weight we needed.

How my eating disorder fed off my Body Dysmorphic Disorder (BDD) (Part 3)

I have a confession to make. I haven’t been shooting my YouTube videos because I am currently in a BDD episode. For those of you who may not know, the Mayo Clinic defines BDD as a mental health condition with symptoms that are either minor and non-harming or flaws that are made up. These flaws can be so distressing for people suffering from this condition that they often spend most of their time looking at their bodies in disgust, or they focus on finding treatments for their problems.

For example, my current BDD episode was triggered when I went to the orthodontist to get new retainers and the technician told me my teeth had shifted slightly. The technician said that teeth naturally shift and that I still had a pretty smile. But later that afternoon when I looked in the mirror, I saw the crooked teeth I had as a teenager before I had braces.

It also reminded me of the days when I was in middle school when my classmates and I would dance in a large circle at recess. One day they made fun of me by calling me “monster and dirty” because my teeth were stained and crooked. They continued to tease me by saying, “Amanda has dirty teeth and never goes to the dentist.” Their taunts made me feel very self-conscious about my teeth. The truth of the matter was my mother was too poor at that time to afford to take me to the dentist.

It’s not just my smile, however, that brings on a BDD flare; it’s also my weight. Even though I only weigh 115 pounds on average, I still see myself as fat. I see chubby cheeks, chubby arms and a rounded belly that sticks out  from behind my top.

One way people with BDD fix this flaw, according to the Mayo Clinic, is to buy bigger clothes.

When I am in a BDD episode like this, I don’t like to leave the house because I am afraid people will think I’m ugly.

But when I do go out, my friends sometimes take me clothes shopping. I tend to buy clothes that are a size larger than  what I normally wear.  After picking something out, my friends say, “Amanda, you’re not that big. Your pants look way too baggy on you. Stop buying baggy clothes.”

My friends often beg me to buy leggings that are tight so that they will show off my figure.  When I come out of the dressing room, I often say, “This doesn’t fit. It’s too tight.” Then, my friends will say, “Well, shoot, you’re so small. I thought you could fit into that.” Then, I go back and pick out baggy clothes. This is one of the classic symptoms to help fix the flaw, according to the Mayo Clinic.

So for now, as I attempt to get back to shooting YouTube videos, all I see in the viewfinder is the flaws of  a person with crooked teeth, chubby cheeks, chubby arms, and a fat stomach protruding from baggy clothes staring back at me. Until I stop believing those lies, and start shooting YouTube videos again, I won’t be able to see the healthy and beautiful person that people say I am.