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Facing Down The Silent Thief of Sight

I knew something was wrong, but I assumed that perhaps all I needed was a prescription of some kind. Still, I was nervous when I got to the ophthalmologist’s office. And with good reason, as it turned out. I was in my early 30’s and I was diagnosed with end-stage glaucoma.

~Helen Gentry | Woman On The Move

In early 2014, I knew something was wrong with my eyes.

A haze had appeared around fluorescent lights in public buildings. Also, my vision always seemed blurry no matter how often I blinked to try to clear it. One day while walking quickly in front of my office building, I ran into a sign and was knocked to the ground. That got my attention! “How could I have not seen that?!” I wondered.

I was busy working fulltime, attending graduate school and raising a daughter, but I finally couldn’t ignore my symptoms anymore. So I scheduled an appointment with an ophthalmologist in my small town. I knew something was wrong, but I assumed that perhaps all I needed was a prescription of some kind. Still, I was nervous when I got to the ophthalmologist’s office. And with good reason, as it turned out. I was in my early 30’s and I was diagnosed with end-stage glaucoma.

Glaucoma is one of the leading causes of blindness worldwide and it is called the “silent thief of vision” for a reason— first the peripheral vision leaves, and the patient doesn’t notice because the loss is so gradual. Once the central vision begins to be affected, alerting the patient to the fact that something is wrong, a significant loss has already occurred.

Heartbreaking News After Diagnosis

After receiving my diagnosis, I also had to digest an additional fact: My condition had resulted from medical malpractice. My optometrist had prescribed a steroid eye drop that I was instructed to use up to four times a day to treat discomfort caused by eye allergies. I now know that this medication is intended for use following cataract surgery. It is not intended to be used for more than 10 days. I used it for 13 months. I also now know that patients who are using this drug are supposed to be closely monitored by a medical professional, and if eye pressure increases, they are to discontinue use immediately.

I was not closely monitored nor was I informed of the risks of using the medication. Instead, I was assured that it was FDA approved and perfectly safe. I was told that the eye allergies could cause some blurriness, which was why I was unconcerned at first about the changes in my vision once I finally did begin to detect them. Just a short time before this medication was prescribed, North Carolina changed state law to allow optometrists to prescribe medications, although they have not been to medical school as ophthalmologists have. My optometrist failed me, and so did my state by allowing this atrocity to take place. Every time I raised the bottle to my eyes thinking that I was being responsible and helping myself, I was giving myself an incurable disease.

Chain Reaction Set In Motion

In the months that followed my diagnosis, I experienced anger and overwhelming grief. I also began to fight to retain my remaining vision. I was a patient at Duke, UNC and Johns Hopkins. At Duke, I underwent trabeculectomy surgery in which a metal shunt was placed in each eye to help drain the pressure. The two surgeries, which I was awake for, were daunting and required a lengthy recovery during which I had to try to stay off my feet.

After the second surgery, I felt pressured to return to work too soon. Once I did, my supervisor put pressure on me to give a brief speech at a large meeting of leadership, faculty, and staff at the college campus where I worked. When I took the podium (a mere week after my surgery), I began shaking uncontrollably. I couldn’t speak and I suffered what I now believe to be a nervous breakdown of sorts. I now understand that major surgery can easily lead to temporary emotional instability, but no one had told me that at the time.

A Difficult Aftermath

In addition to feeling pressured to return to work, I also experienced workplace discrimination in a variety of ways. My boss would periodically stop me on campus and jokingly ask me if I could see how many fingers he was holding up.

A different supervisor condescendingly asked me if I had any doctors’ appointments coming up. His reason being that he needed to be aware if I would be feeling emotionally unstable in the days ahead. He then informed me that he had a wife and daughters and therefore understood the emotions of women. He also said that I could talk to him if I needed to, adding that the word “panties” was a regular part of his vocabulary. It was obvious that he thought that my breakdown had not stemmed from receiving a devastating medical diagnosis and undergoing a terrifying surgery, but it was because I am a woman. No woman should ever be cornered by her male boss while alone in his office and be encouraged to talk about her undergarments.

Sometime later, I received my “TPD discharge” from the US government. This was a letter in the mail stating that I had been found by a government-contracted medical professional to be “Totally and Permanently Disabled.” (Let those three words sink in for a moment…..I can see them now, in bold font across the top of the document.) The letter continued to explain that my outstanding student loans were being discharged completely. As a totally and permanently disabled person, I was not expected to have significant work, so I was not expected to pay back my student loans.

Reclaiming A Vibrant Life

Fast forward to the present, and I am not totally and permanently disabled, nor have I ever been. I am happily self-employed as a life coach, franchise broker, and realtor. I get to partner with my clients to support them in building the life that they want to lead. Meanwhile, I am living my most vibrant adventurous life.

I love being an active mother, wife, and friend. I am currently enjoying traveling as much as possible and seeing as much of the world as I can. I enjoy hiking, taking painting classes and cooking. Soon I will be starting piano lessons. There is so much I want to do. I am filled with gratitude every day that I get to live in the gorgeous mountains of Western North Carolina. My mission through my work and volunteer service in my rural community is to see people, particularly women and families, empowered and lifted out of poverty.

Healing

I’m currently 38 years old, and my worst-case prognosis at one time was that I will be completely blind by the time I am 50. I do not accept this prognosis. (At one point I had a friend strongly encouraged me to simply accept my prognosis, and I concluded that no real friend would encourage another to voluntarily sit down, shut up and go blind without a fight.) I understand that many patients report feeling that it is helpful to them to accept their diagnosis; however, I choose to draw my strength and courage from fighting and defying mine. This is a daily journey of faith in Christ and His healing power. The distinct discrepancy between my medical records and the kind of life that I actually experience on a daily basis is nothing short of a miracle, and I want to continue to be a walking miracle all of my days.

Image Descriptions:

  • Featured image taken last summer near Helen’s home in NC shows her standing outdoors. A pretty brunette with shoulder-length wavy hair, Helen is wearing a print tank top and skirt. The waterfall behind her makes a beautiful backdrop.
  • A gallery of two black & white photos (before and after) of Helen from her surgery at Duke. In both photos, she’s on a bed in her hospital gown. In the post-surgery photo, her left eye is bandaged.
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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