Seeing Beyond RP

BABY TALK! RP Mom Struggle #1: Changing Baby’s Diaper!

Okay, so the least glamorous part of mom life with a baby is changing those diapers (especially when it comes to #2!). For those of us with RP, not only is there no glamour involved, but it can be tricky! As I was changing my little one, I figured I’d share a couple tips.

1. Lighting: Ensure that the area you use for diaper changes is bright! Add a lamp for extra lighting if need be. If you have to use a public space to change a diaper, then carry a headlamp just in case the lighting is too dim.

2: Wipes, wipes and more wipes. Need I say more? Use as many as you need until the wipes come out clean. If it’s just too messy and you don’t feel like you can get it clean enough - there’s always the option for a quick bath! Also, if it’s a #2 diaper I’m changing, I always get the wipes ready before I even begin taking the diaper off!

3. A toy: This tip actually inspired this post! It’s no secret that little hands like to wander and explore, and little people like to wiggle around. This can prove troublesome when your focus needs to be on one area and you aren’t able to see little hands touching what they shouldn’t. Moreover, for those with RP, making sure we cleanup well enough can take a little extra time. Giving your baby their favourite toy to hold onto with both hands (when they’re old enough to do so, of course) and to distract them makes things a little easier!

I hope that these tips help out some mamas (or dads!) as we Navigate life with RP and babies!
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 Who else regrettably wants to join the club of “I poured scalding hot water over my hand today?”. 😩

I immediately submerged my hand into freezing cold water, so luckily the burn isn’t visibly too bad, but I am definitely still feeling that burning sensation! Ouch 🔥

NOTE TO SELF (and all RPers who are working with hot liquids!):
1. Do not hold the cup when pouring the water into it (in case you miss, as I unfortunately did…). Note: if you have very little to no useable sight, consider getting a liquid level indicator that beeps when the liquid reaches a certain level.
2. Have sufficient lighting in your kitchen, especially where you prepare and cook food.
3. Invest in a kettle, or even better, a self-heating mug (I have not personally used one, but this would eliminate the need to pour hot water into a cup, and the chance of pouring hot water on one’s hand).

See this link for some tips to care for a burn if it happens to you (which I pray it does not!).

Happy Thursday!

Home remedies for burns and scalds A person can typically treat mild burns and scalds at home. However, some anecdotal remedies can worsen things. Learn the differences here.

I love coconut for so many reasons. This is another one to add to the list! 🌴

“Its rich content of healthy fats and antioxidants can help slow sight loss conditions such as retinitis pigmentosa… making coconut a valuable part of a diet aimed at preventing blindness.”

Coconut for eye health Go coco-nuts for better vision! Sight Research UK reveals how coconut can benefit your eye health and overall wellness.

Is a high fat diet associated with an acceleration of the progression of RP?

This study says yes.

Those of us who have RP, and still have some useable sight remaining, often find ourselves asking “What can I do to slow down the progression of this disease?”

I have long known that high fat foods, predominantly found in animal products, are the root cause of so many devastating illnesses, including diabetes, the big “C”, heart disease and obesity. So then, it peaked my curiosity if this same link exists between a high fat diet and RP. This study seems to suggest this to be the case. In fact, there are many other studies connecting a high fat diet to the deterioration of the retina.

Have any of you found a difference in your sight when consuming a plant based diet free of processed foods, versus a high fat diet? 🤔 🌱

Short-term high-fat feeding exacerbates degeneration in retinitis pigmentosa by promoting retinal oxidative stress and inflammation The retina is considered a window to the brain, and retinal degenerative diseases involve the same mechanisms as those of other neurodegenerative disorders. Neuronal degeneration is a complex process involving environmental stress, which can affect vulnerable ...

Music has the ability to uplift us when we face adversity 🎵

This particular song encompasses lyrics that have stuck with me through the past two decades as I have faced the struggles of RP.

“There’s Hope” by India Arie 🎵

The specific lyrics in this song that tug at my heart strings are:

“Off in the back country of Brazil
I met a young brother that made me feel
That I could accomplish anything.
You see just like me he wanted to sing
He had no windows and no doors
He lived a simple life and was extremely poor
On top of all of that he had no eye sight,
but that didn't keep him from seein' the light
He said, what's it like in the USA,
and all I did was complain
He said-livin' here is paradise
He taught me paradise is in your mind”

I believe that incorporating music into our lives can positively affect our mental health, and aid in self-care. It is so important to find mediums that do this, as many of us struggle with negative thoughts and feelings associated with RP.

What song has helped you on your journey with RP? 🥰

There's Hope Provided to YouTube by Universal Music GroupThere's Hope · India.ArieTestimony: Vol. 1 Life & Relationship℗ 2006 Motown Records, a Division of UMG Recordings...

Spicy Saturday: Say hello to SAFFRON!

If you haven’t heard of the spice saffron, today is your lucky day!

Saffron threads are derived from the elegant purple flower Crocus sativus. Saffron has many impressive health benefits, and research shows that these benefits extend to our eye health, and in particular, to those with RP.

Now if you are wanting to explore using this spice, do be sure that you do your research and purchase it from a reputable seller. Due to its high cost, there are a lot of fakes out there unfortunately.

Safranal, a Saffron Constituent, Attenuates Retinal Degeneration in P23H Rats Saffron, an extract from Crocus sativus, has been largely used in traditional medicine for its antiapoptotic and anticarcinogenic properties. In this work, we investigate the effects of safranal, a component of saffron stigmas, in attenuating retinal degeneration in the P23H rat model of autosomal d...

☕️ If you are an avid coffee drinker, you need to read this… ☕️

So many people rely on a cup (or several cups!) of coffee to get them through their day. For those who are visually impaired, it is important to understand what coffee consumption means for your eye health.

While a cup of coffee here and there will likely not cause any long term issues for your eye health, coffee connoisseurs should beware of the long term effects to your eye sight from high amounts of caffeine consumption.

Drinking a large amount of coffee everyday (3-4 cups) for an extended period of time can result in high blood pressure, and high blood pressure has negative impacts on your eyes. These include risking damaging your retina, (and as people with RP, this is the last thing we need!), blurred vision, vision loss, and a buildup of fluid under your retina. We already battle with many of these issues having RP, so risking compounding the symptoms we already face by consuming too much caffeine, in my opinion, is just not worth it!

So please, be cognizant of your caffeine intake! This not only applies to coffee, but other sources of caffeine too - especially energy drinks, which are packed full of an incredible amount of caffeine!

If you are wanting to explore replacing coffee with another warm drink, tea is certainly a great choice! I will be offering content on the best teas to drink that benefit your eyes, so stay tuned!

Does drinking coffee damage your eyesight? | Short & long-term effects | Northeastern Eye Institute Find out how drinking coffee can damage your eyesight, including short- and long-term effects, how serious the risk of glaucoma is, & how much is too much.

5 Tips: Alleviate Stress and Anxiety 🧘‍♂️

Employment: If your job is causing you an unmanageable amount of stress or anxiety, perhaps it is time for a change. If your employer is unable to accommodate you in a manner that will ease your stress, then looking for a different employer or line of work may be in order. This may mean finding a job closer to your home, working from home, returning to school to pursue a different field of study, or becoming self-employed.

Family and Friends: Those who we surround ourselves with can greatly affect our mental health. If you have people in your life who are unsupportive, or treat you poorly because you have RP, it may be time to have a conversation with them about how their actions towards you affect your well-being. If they are unwilling to change, then it may be time to distance yourselves from them. Connecting with people who will bring a sense of security and positivity into your life can work wonders for your mental health.

Shopping: Shop online and have it delivered to your home, or pick it up. This will reduce the stress of finding items in stores and the anxiety associated with being around crowds.

Hobbies: Engage in activities you enjoy. This many mean making adjustments to the hobbies you once loved, so to make them accessible to your current level of sight, or trying new things that suit your abilities. Activities that involve exercise and relaxation are definitely a great option - as both help with relieving stress and anxiety.

Self healing: I believe this is the most important tip of them all. RP can be an overwhelming process that may involve experiencing stages of denial, anger, depression and acceptance. Arriving at the point where you accept your RP can be quite the journey, but it is vital for your mental well-being. Take time to reflect on the person you are, and what you want out of life. Recognize that having RP is very manageable, and those with limited sight can live very successful, joyful lives, Limited sight does not impede upon your “vision”. Engaging in meditation, or connecting spiritually can aid this process.

While I have not gone in-depth on these points, I do hope this offers a starting point. I will offer more thorough ideas to alleviate stress and anxiety in future posts.

RELAX 🧘‍♀️ Your eyes will thank you.

It goes without saying that living with RP can cause stress and anxiety. These feelings can be problematic not only for your mental well-being, but also physically, including for your eyes.

Too much, or constant stress can result in numerous eye problems. These include blurry vision, eye floaters, sensitivity to light, tunnel vision, and eye strain, among other issues.

Such symptoms may already be present due to RP. With this said, however, it is possible that such symptoms could arise or worsen if you experience severe or continuous stress or anxiety. Expanding on this notion, I do question whether stress plays a factor into the progression of RP (which I will explore to see if any research has been conducted on this topic).

Managing and finding ways to ease these feelings then, is so important for your eye health. Coping with the stressors associated with living with RP can involve making changes to your lifestyle or mindset, or whatever else is causing these feelings to arise within you.

Now, on a lighter note, please don’t let this information stress you out or cause anxiety! I will make a post shortly that offers advice on how to manage and alleviate stress and anxiety - particularly as it concerns people with RP.

Surprising Links Between Stress and the Eyes Stress can interfere with your sleep, skin and digestion. But did you also know it can affect your eyes? Here's what you should know, especially if you have glaucoma or an ocular surface disease such

What is the connection between yellow and green fruits and vegetables and your eyes?

LUTEIN!!!

Lutein is highly beneficial for both your eye health and brain function. The daily recommended amount is 6mg, however, those with RP may want to increase that amount.

Many people with vision loss may choose to take a lutein supplement, which typically contains 10mg-40mg of lutein. However, this amount is so easy to acquire by eating a small amount of fruits and vegetables daily.

Two of the best options are spinach and kale! 🥬 One cup of cooked SPINACH contains 16mg, compared to one cup of raw KALE, which contains 11mg. Eating either of these leafy greens gives you well over the recommended daily amount of lutein. Two easy ways to eat these lutein packed greens are to simply add a cup of kale to your morning smoothie, or throw a cup of spinach into a stir fry for dinner.

If you want to consume more than 11-16mg of lutein daily, then throw some extra leafy greens, bell peppers, kiwi, zucchini, or squash, (among many others) to your diet.

Go ahead - enjoy fruits and vegetables (especially dark leafy greens). Your body, and eyes will thank you! 🥰

Mindful Monday Moment 🥰

The mistreatment of those with RP is not a YOU problem. This is a SOCIETAL problem.

From my subjective interpretation of the word, the term disabled is disempowering. I feel that I am “able” to do whatever I put my mind to within my abilities, just like everyone else in this world who has a limitation. And everyone does, whether it be defined that way or not. To be labeled as disabled strips away your humanity and opens you up to a world of judgement and ridicule that society has associated to the term disabled. I feel that it is a way of “othering” those with any sort of impairment that is not considered “normal” by mainstream society. Since we are considered “abnormal”, people who are “abled” inherently believe that we must be “fixed” to be functioning, equal parts of society, hence, the frequently arising questions of, “Can’t you just wear glasses?” or “Is there a cure?”. This clearly reflects the lack of acceptance of our limited sight. Yet, this was not always the case. The term disabled evolved during the 18th century, when “handicapped” people began to be viewed as carrying a personal burden, however, prior to this time, those with impairments were cared for on a societal basis, were contributing members of society, and had a sense of belonging. I believe that our individualized, capitalist society has torn much of this away. As human beings, we should never feel like a statistic, a burden, or be stripped of our dignity.

For the public to have an understanding of the adversities we face, those who lack awareness need to be educated. To be treated like an equal, we need to be seen as one. I am tired of hiding. It is time for change.

🌲 How to Survive Rural Living with RP… 🌲

The peace, simplicity and tranquility that accompanies rural life is a dream come true for many, but undoubtedly poses obstacles for those with RP. BUT, there are adaptations and solutions that can be implemented. Let’s explore them!

Depending on the distance to amenities, the greatest struggle can be the lack of transportation if you do not drive. This can result in obstacles when it comes to education, employment and acquiring basic necessities.

ONLINE EDUCATION AND JOBS

There are tons of educational programs and courses that are now offered online. Whatever your field of study, there is more than likely an online program being offered. If you have younger children( as I do), homeschooling is definitely an option in a rural area, with many online programs for them to choose from.

Another stressor when living in a rural location can be accessing employment. In today’s world, however, there are a wide range of companies that offer online jobs, and if you have a particular skillset, you can create your own sources of income online, such as by teaching online courses.

ONLINE SHOPPING

Have you noticed a trend yet?! You can pretty much get anything delivered to your door, or to a nearby post office. In the rural area that I live in, the post office is a 3 minute walk away! I know that this is not the case if you don’t live right in a village or town, but having what you need delivered to one pick up location can be easier than finding a ride to go into the city to shop.

GARDENING

Now, the one thing that usually can’t be shipped to you is produce (unless you have a nearby farm that delivers to your door - which there are some that do this!). Eating fresh fruit and vegetables is such an important part of my diet, and should be for you! Our eye health is positively or negatively affected by what we eat. If you have the space to do so, and many people in rural areas have this luxury, I would highly suggest acquiring a green thumb, if you don’t already have one! Growing your own food is so fulfilling and therapeutic in nature. It also alleviates the need to go grocery shopping so often, and in turn, finding transportation to do so.

Of course not everything is accessible online, and you do need to, and want to, leave your home sometimes! If you don’t live with someone who can provide you transportation to where you need to go, then building connections with others is important. This may be family members, friends, neighbours, church groups or organizations in the community that offer rides to people to attend appointments.

So, go ahead, take a deep breath, and enjoy the rural life and the beauty of nature that it provides!

❄️❄️❄️ 3 Winter Essentials if you have RP ❄️ ❄️ ❄️

The winter months become tricky for those of us with night blindness, as daylight hours are shortened and snow covered sidewalks and streets hinder our already limited depth perception and pose difficulties when using a cane.

The upside to snow covering that I do find helpful however, it the added brightness. While snow makes it easier to see in one aspect, on sunny days, it can result in extreme brightness, which warrants the absolute need for sunglasses!

The other necessity in the winter months for those of us who live in colder climates are ice trekkers! These attach to the bottom of boots to tackle the slippery conditions of ice. (Note: do not wear ice trekkers inside on a smooth floor, as they present a whole other very slippery situation!).

Lastly, when venturing outside in not so ideal winter conditions, it can be helpful to have a friend or family member accompany you to assist in avoiding hazards, especially when a cane is not a viable option. That is, unless you have a furry friend by your side.

Be safe and enjoy the beauty of winter!

What does the show SAVED BY THE BELL have to do with RP? The answer is…

Weasel!

After his childhood role, Isaac Lidsky went on to graduate from Harvard and become super successful.

Eyes Wide Open: 5 Valuable Lessons Isaac Lidsky Learned from Losing His Eyesight - Aish.com Your greatest problem can become your greatest solution.

Let’s Talk Vitamin A! This is widely known to very well be the most important vitamin for eye health. While many people associate Vitamin A with carrots - 🥕which is a fabulous source of Vitamin A 🥕- I want to focus on fruits today!

One rule of thumb to follow when identifying food with high amounts of Vitamin A is by its colour - that being, orange! As such, while many fruits contain Vitamin A, there is one that stands above the rest, which is….

CANTALOUPE!!!

Cantaloupe contains 3,382 IU of Vitamin A per 100g serving. This means that eating a serving of cantaloupe will provide you with well over the recommended daily intake (approx. 2300-3000IU) of Vitamin A.

What is the next best fruit to get your fill of Vitamin A?

APRICOTS!!!

With 1,926 IU of Vitamin A in a 100g serving, apricots are a great choice to increase your Vitamin A intake.

Many of us with RP want to consume high levels of Vitamin A, which can pose risks when obtaining it from a supplement; however, acquiring Vitamin A from fruits and veggies does not pose these same risks, so eat up!!

Which fruits contain the most vitamin A? Have you noticed that many of the fruits high in Vitamin A are orange or yellow in color? That's thanks to beta carotene, a source of Vitamin A that gives…

Welcome to “Seeing Beyond RP”! This page is dedicated to inspiring and encouraging those living with RP and vision loss to live healthy, fulfilling lives. Together we can break the confines of societal expectations and not merely survive, but thrive!