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We Can Change – The Power Of Community

We Can Change – The Power Of Community

“Life has changed me from being fearful and insecure, into now working to help others find themselves and reach for the resources and tools they need to thrive.”

~Carrie Morales

The Struggle of Growing up with a Visual Impairment

1. We Can Change – The Power Of Community image of Carrie and her son description is in the body of the post.
1. Carrie Morales

Growing up being legally blind with Aniridia was an immense challenge. Aniridia is the lack of an iris and the underdevelopment of the eye. In my case, it also comes with glaucoma, cataracts, microcornea, and nystagmus.

I struggled with insecurity, lack of confidence, loneliness, and a general sense of un-belonging. Though surrounded with other family members who were also blind or visually impaired, I felt disjointed from the rest of my peers. As a result, I was never able to fit in despite all my efforts.

I struggled and concealed my depression and hurt with rejection, when people avoided or gossiped about me, and asked things such as “why do your eyes move like that?” or “what’s wrong with her?” Because of microcornea, my eyes appear smaller and nystagmus causes my eyes to constantly and uncontrollably move around.

I wasn’t “normal”.

My defense was to emotionally detach. I was shy and became shyer and there would be days that I didn’t speak to anyone unless forced to by a teacher.

What brought me out into the proverbial light was the help and support I found through community.

Beginning to Find Myself

My TVI (teacher for the visually impaired) told my parents about a summer camp for the blind. That camp literally changed my life as I thought I was alone, the only one struggling, but I wasn’t. It was through that program and others, I met fellow peers who shared my struggles. Attending these programs while in high school and transitioning to college taught me so many things. I learned independence, life skills, assistive technology, social skills, and leadership.

What’s more, I saw other people who were blind and visually impaired being successful. I met and interacted with those who were living their dreams and striving toward their goals. This is what I wanted to do; to be like them, to have confidence and show that I was able. To reach past what society said I could and could not do and surpass even my own expectations.

As a teenager, I stumbled and fell, was reckless, and made bad decisions. But life continued and led me to eventually move with my family to North Carolina. It was here I took a job at a company that hired many blind people.

Starting out in manufacturing, I was promoted to being a receptionist. Eventually, I began working at the low vision center that was part of the company. NC is quite different from New Jersey which is where I mostly grew up. In the northeast, people generally mind their own business and didn’t speak to strangers.

Well, North Carolina is the opposite. People would ask how I was, about my life, what I liked to do —all in the first interaction! Oh my, it was such a culture shock, to say the least. Yet, it pried me out of my shell and changed me.

A Force of Change

I went from being anti-social to not being able to stop talking. Over time, I gained more confidence and learned how to present myself.

I’ve always loved technology and had a thirst for knowledge. Through my time working at the low vision center, I learned so much. I gained experience in:

  • services,
  • resources,
  • government agencies,
  • available technology,
  • and met countless people with differing amounts of vision and needs.
2. Pablo & Carrie image description is in the body of the post.
2. Pablo & Carrie

Along the way, I met my then to be husband, Pablo; we moved in together, got married, had a son. Due to the high costs of childcare and transportation, I decided to stay home with our son. Becoming a stay at home mom allows me the opportunity to invest in him completely as my father did for me.

With Little Pablo being the first child, it was so exciting learning and enjoying him. This new life, a whole bundle of potential is everything to us. We found out that he has aniridia like me. Though it hurts because we all want the best for our children, he’ll be okay. I know that he will grow up with all the resources and support he will need.

As life went on I grew accustomed to the new way of life with a little one. Settling into my routine, I began to have more time. It was in a moment of looking for something to do besides the day-to-day tasks, I had an idea. I decided to start an organization to share what my husband and I have learned and give others encouragement. Afterall, we all have it within us to continue, to move forward, and to reach for our goals.

A New Journey

3. Big Pablo & Little Pablo image description is in the body of the post.
3. Big Pablo & Little Pablo

I grew up visually impaired, but my husband, Pablo, went from fully sighted to totally blind.  None of us have the same exact stories. We have our own journeys, but we still face similar struggles and we can support and help each other.

I began my youtube channel (Live Accessible) and website (http://liveaccessible.com) on November 1, 2018 and am amazed at the growth we have had.

Our mission through our YT channel and website is to share hope, encouragement, community, resources, tips, and technology to help others who are blind, visually impaired, and sighted supporters. Along the way, I’ve made many friendships, met so many amazing people, and have learned so much from my viewers.

I’m grateful for the opportunity to give back to this community. Together, we can make this world into a better place where we can tear down invisible barriers in society and in this world through raising awareness, mutual support, technology, and creativity.

We can all live accessible.

We Can Change – The Power Of Community Featured Image Description:

Outdoor selfie of Carrie Morales smiling. Carrie’s long black hair frames her pretty face. She is wearing a black leather jacket and a black top embellished with silver accents on the neckline.

Additional Images:

  1. An outdoor selfie of Carrie and Little Pablo. Carrie is holding Little Pablo with her right arm and she’s wearing a blue long-sleeved sweater. Little Pablo is wearing a red fleece jacket.
  2. Big Pablo & Carrie share a sweet embrace. They are standing outside and sunbeams are illuminating Carrie’s hair.
  3. Big Pablo is standing on a lawn holding Little Pablo in his arms with his white cane tucked under his right arm. Both are casually dressed and wearing sneakers. Little Pablo has on a red puffer jacket and his dad has on a navy blue jacket.

Connecting With Carrie:

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World Glaucoma Week 2017 #7 – March 18

Week In Review

NEI/NIH Info card: Is there more to see in your family tree? Glaucoma runs in families.
Courtesy: National Eye Institute, National Institutes of Health (NEI/NIH)

Now, this is embarrassing. I thought I was being ultra clever by pre-scheduling my draft glaucoma posts for this week. Since I had a morning appointment I changed today’s post time to later in the afternoon to give myself some time to update it prior to publication.

Well, you can probably guess what happened. Yeah, it was published at noon with only a title. Tsk, tsk, I’m so disgusted right now for a number of reasons but I refuse to let this become a rant. So without further ado let’s begin.

I covered quite a bit of ground this week on glaucoma and I hope you are a little more familiar with the disease and steps you can take to preserve your eyesight. The American Academy of Ophthalmology states that people who have a higher than normal risk are:

  • over age 40
  • have family members with glaucoma
  • are of African or Hispanic heritage
  • have high eye pressure
  • are farsighted or nearsighted
  • have had an eye injury
  • have corneas that are thin in the center
  • have thinning of the optic nerve
  • have diabetes, migraines, poor blood circulation or other health problems affecting the whole body

Talk with an ophthalmologist about your risk for getting glaucoma. People with more than one of these risk factors have an even higher risk of glaucoma.

If you missed any glaucoma-related posts from this week following are links to each one:

  1. Eye-Q Test
  2. What You Need To Know
  3. Seeing Through Glaucoma Diagnosed Eyes
  4. Glaucoma By The Numbers
  5. Main Types Of Glaucoma
  6. Arriving At A Diagnosis

Remember you are the advocate for your health. Stay on top of your healthcare, be informed by asking questions and don’t stop until you have satisfactory answers.

 

 

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World Glaucoma Week 2017 #6 – March 17

Sinisterly Silent Sight-Stealing Disease

A view of what of how two little boys holding a ball appear through the eyes of a person with glaucoma.
Courtesy: National Eye Institute, National Institutes of Health (NEI/NIH).

As a glaucoma patient, I realize how critical it is for those living glaucoma and their family members to understand the nature of this eye disease, how it is diagnosed, and then managed. It is my hope that by sharing my personal experience as well as what I’ve learned along the way will help you to be more informed.

According to the American Academy of Ophthalmology, a glaucoma screening that only checks your eye pressure is not enough to detect the disease. Years ago I used to have the puff test where a puff of air is blown into the eye to measure its pressure but over the course of the past eleven years, I’ve had what looks like a pen (tonometer) or doohicky placed on the eye (pachymeter) testing to obtain this measurement. Since numbing drops are used in the eyes prior to tonometer or pachymeter test there is no pain or discomfort.

While my eye pressure was consistently high for an extended period of time the diagnosis during this period was ocular hypertension. It should be noted that in addition to the tonometer and pachymeter tests, to provide the doctors with a more comprehensive view of my retinas I was having regular OCT scans. At some point during this process, my retina specialist put me on a trial run of Xalatan (eye drops for glaucoma) to see how my pressure would respond.

Multiple issues in addition to ocular hypertension, high myopia, macular holes, torn retina, and cataracts I’m sure made it a little challenging to get a definitive glaucoma diagnosis. If memory serves I think the field testing by my ophthalmologist along with high-risk factors and sustained ocular hypertension sealed the deal. As a result, I now have to see the ophthalmologist every 3 – 4 months and for the rest of my life I will continue to taking glaucoma eye drops every night.

Since I am not an eye doctor I would think my path to a glaucoma diagnosis probably is not the norm, however, the Glaucoma Foundation provides the following helpful list of tests which I’ve defined:

  • Tonometer – an instrument for measuring tension or pressure, especially intraocular pressure*.
  • Pachymeter – an instrument used to measure thickness, especially of a thin structure, such as a membrane or a tissue*.
  • Visual Field Test – is an eye examination that can detect dysfunction in central and peripheral vision which may be caused by various medical conditions such as glaucoma*.
  • Ophthalmoscopy – an instrument for examining the interior structures of the eye, especially the retina, consisting essentially of a mirror that reflects light into the eye and a central hole through which the eye is examined*.
  • Imaging Technology – is the application of materials and methods to create, preserve, or duplicate images*.
  • Gonioscopy – describes the use of a goniolens (also known as a gonioscope) in conjunction with a slit lamp or operating microscope to gain a view of the iridocorneal angle, or the anatomical angle formed between the eye’s cornea and iris*.

If you have a moment, check out the above list from the Glaucoma Foundation as their explanations on each of the procedures is in laymen’s terms. The added benefit of this site is all the additional information they provide on glaucoma.

Have a great Friday!!

*SourceMedical Dictionary

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World Glaucoma Week 2017 #5 – March 16

Primary Open & Closed Angle Glaucomas

Info Card: You could have glaucoma and not know it. Make a resolution to find out. Schedule a dilated eye exam. Image of the US indicating 50% of the population knowing they have glaucoma and the other 50% who don't know.
Courtesy: National Eye Institute, National Institutes of Health (NEI/NIH).

Over the past few days, I’ve shared the Eye-Q Test, risk factors, what it looks like, and statistics on glaucoma. Today I want to focus on the two main types:

  1. Primary open-angle glaucoma
  2. Closed-angle glaucoma

Primary Open-Angle

There are several types of glaucoma and out of the two main types, primary open-angle is the most common. Speaking from personal experience even though my eye pressure was running anywhere from 30 to 40+ mm Hg this type of glaucoma progresses gradually, is totally painless, and there aren’t any other noticeable symptoms.

Like a clogged drain, in primary open-angle glaucoma, the eye doesn’t drain fluid as well as it should. Pressure builds and begins to damage the optic nerve. What I found interesting is there are people whose optic nerves are sensitive to normal eye pressure (12-22 mm Hg). This is why it’s so important to have regular eye exams to find early signs of damage to the optic nerve.

Closed-Angle Glaucoma

Angle-closure or narrow-angle glaucoma occurs when a person’s iris is very close to and can end up blocking the drainage angle in their eye. An acute attack happens when the drainage angle gets completely blocked causing eye pressure to rapidly rise. This is a medical emergency requiring immediate treatment to prevent optic nerve damage and potential blindness. Following are symptoms of acute-angle closure glaucoma*:

  • Sudden, severe pain within your eye and an ache around your eye.
  • Redness of your eye.
  • Blurred or reduced vision, often with circles (halos) seen around lights.
  • The pain may spread around your head and be felt as a severe headache.
  • Some people develop a feeling of sickness (nausea) and are sick (vomit).
  • Your eye usually feels hard and tender.
  • You may feel generally unwell.
  • The clear surface of your eye (your cornea) can look hazy.

30% or 1 out of 3 people with angle-closure glaucoma will have a sudden blockage causing an attack. However, in many people, this type of glaucoma called chronic angle-closure glaucoma develops slowly with no symptoms until there is severe damage or they have an attack.

*Source & Additional Information: Patient