China Surgeries – the Back Story

Written By: ingridricks - Aug• 18•17

CAROlWhen I first contacted Carol Gu regarding the RP surgeries in China, I thought her primary role was that of a patient coordinator. It wasn’t until I arrived at the treatment center and began talking with Carol that I discovered she is the visionary and lynch pin behind the entire international treatment program.

Carol told me that she developed her passion for helping RP patients while earning her nursing degree in Heidelberg, Germany. While there, she worked at a nursing home and developed a close friendship with an elderly woman who suffered from RP. Carol was familiar with the blinding eye disease because it is a relatively common condition in China, and she knew that it was treated with acupuncture, Chinese herbs and other elements of Traditional Chinese Medicine (TCM). But when she looked for similar treatments in Germany for her friend, she discovered that there was none.

“I searched the internet for every solution I could find but all I came across were eye exercises and vitamin supplements,” Carol explains. “It broke my heart that I wasn’t able to help her. But when I returned to China in 2009, I was determined to help other RP patients around the world.”

Carol began researching treatment options for RP, and discovered that along with TCM, surgeons were performing vascular shunt surgeries and stem cell implantations that were restoring some vision for patients and helping to prevent further degeneration. She became obsessed with finding the best treatment for international patients and began contacting doctors, asking to interview them and follow their patients’ progress. In 2013, after three years of research, Carol put together a team of the top RP surgeons and launched the China RP Treatment Center for international patients.

Because affordability and service quality are both critical elements of the treatment program, Carol says she has been careful about expanding it too quickly. She has also been very selective in the patients she accepts, because she realizes the surgeries aren’t a fit for everyone. “There is no cure for RP. And as much as I wish we could help everyone, it’s difficult to help patients who are in the very late stages of the disease,” explains Carol. “And because there are so many variations of RP, results vary greatly from patient to patient. Our goal is to help as many patients as we can to improve some vision and halt or greatly slow down the progression of the disease.”

The treatment center in Changchun (where I underwent my surgeries) was the first phase of Carol’s vision. The next phase involves a more integrative treatment center that opens mid-September in the heart of Beijing. Along with the surgeries, IV infusions and eye injections, comprehensive TCM—including both traditional and electro-acupuncture—will be included in the treatment package.

“Having a world-class RP treatment center in Beijing that integrates the best of western and TCM medicine has been my dream since moving back to China in 2009,” notes Carol. “In Beijing, we will be able to access even more top RP specialists. And because of its location, it will be much easier for our international patients to make the journey. And we are able to do this while still keeping prices affordable.”

For Carol, helping RP patients is more than a passion—it’s her calling.

“My patients often become lifelong friends and I want to continue to do everything I can to help them,” says Carol. “It’s my dream to one day travel the world to visit all the RP patients I’ve had the honor of working with over the years. I want to see them in person again and have them see me.”

For more information, visit www.restorerpvision.com

 

 

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China Surgeries – My Experience

Written By: ingridricks - Aug• 07•17

As some of you know, and even helped make possible (thank you so much), I’ve spent the last fifteen days in China—undergoing vascular shunt surgeries and stem cell implantation. I made the decision after hearing positive feedback from fellow RPers Brian Smith and Jodi Parr—who underwent the surgeries nearly a year ago—and extensive communication with Carol Gu, the coordinator and visionary behind the China RP International Treatment program. Acupuncture had held my eyesight steady for several years. But my eyesight took a big hit during the aggressive chemotherapy I underwent last year, and I knew I needed to do something before it was too late. The principals behind the surgeries made a lot of sense to me. The vascular shunt surgeries help increase blood flow and circulation to the retina, which I know is severely lacking in RP patients and the whole focus of the acupuncture I have been receiving for the past four years. And the stem cell surgery both stimulates dormant cells and grows new blood vessels that are critical for healthy visual function. I’ve been actively pursuing stem cell treatments for five years now, most recently in California—where in April I qualified for the second phase of their stem cell trial, and have heard nothing since. The first step was filling out an extensive patient evaluation form to ensure I qualified for the surgeries. From there, I had lengthy conversations with Carol to ensure their safety and efficacy. Once I was convinced that there was no downside, I decided to go for it.

Though hopeful, I wasn’t sure what to expect. What I found has been so remarkable from my perspective that I feel the backstory deserves a blog post of its own, which I will share with all of you next week. But here, in a nutshell, is my treatment experience.

 

Day 1: My daughter, Sydney and I landed at the Longjia International Airport at 3:30 in the morning, Tuesday July 25th. We were exhausted after a long delay in Shanghai and were thrilled to be warmly greeted by the English-speaking coordinators, Carol Gu and Patrick Lee. They drove us to the treatment center—approximately a half an hour from the airport—and got us situated in a nicely furnished Western-style suite within the center. As soon as we arrived, we were met by a nurse who performed blood work and urine testing. Afterward we slept for several hours. Later that day I underwent a series of tests to determine my suitability IMG_1814for the vascular shunt surgeries and stem cell implantation. These tests included an FERG to measure retinal function, a visual field test, a visual acuity test, an Intro Ocular Pressure test, a PVEP test to measure optic nerve function, and an eye ultra sound to determine if my eye structure was suitable for the stem cell implantation. The rest of the day was spent resting and getting over jetlag.

Day 2: After taking my blood pressure and temperature, I underwent preparation for my first vascular shunt surgery. This involved a trip to the hospital barber to have the right side of my head shaved, about two inches above my ear. Then it was time for the surgery. Done under local anesthesia, this procedure involved a small incision directly above the ear to block one of many arteries to my head. This, in turn, increased blood flow to the optic artery. This surgery took approximately ten minutes. Later that day, I was started on IV infusions containing a blend of Chinese herbs to promote blood flow and circulation throughout my body.

Day 3: This was largely a recovery day, though I received another IV infusion. I was also started on the first of fourteen eye injections safely inserted through ocular tissue. These injections also contain Chinese herbs designed to increase blood flow and circulation to the retina. In addition, they started me on oral Chinese herb medication—again to promote blood flow and circulation.IMG_0793.JPG

Day 4: I received the second shunt surgery on the left side of my head, along with the IV infusion, eye injections and oral medication.

Days 5 and 6: These were primarily recovery days with the IV infusions, eye injections and oral medications. On Day 6, Carol and Patrick took Sydney, me and the two other international RP patients to a beautiful lake and park constructed during Japanese colonial times. It included a Buddhist temple, which was amazing.

Day 7: Stem cell day! This is the day I have been waiting for. Preparation for the surgery involved clearing my tear ducts, in which a needle is inserted into the tear duct followed by a saline solution wash. Afterwards, the nurses performed a comprehensive eyewash in both of my eyes. Neither of these procedures were particularly pleasant, but they were manageable. Then it was time for the surgery, again performed under local anesthesia. A tiny cut was made at the inside corner of each eye where millions of MSC stem cells were implanted into the back of my retinas. The entire procedure for both eyes took about ten minutes. Once done, my eyes were completely bandaged for 24 hours. An important thing to note about this day: my visual acuity increased by one line in my left eye and two lines in my right eye in a visual acuity test conducted an hour before my stem cell surgery. This improvement is a result of the vascular shunt surgeries.

IMG_0855.JPG-2Day 8: After 24 hours in total darkness, my bandages were removed. I can’t tell you how much I hated not being able to see anything, and how much it reiterated the importance of doing everything in my power to save my eyesight. My eyes, though blurry and sore, seem to have adjusted well to the stem cells. In the first 24 hour period, I had no adverse reaction. Along with the regular IV infusion, eye injections and oral medication, they started me on antibiotic eye drops to protect against infection.

Days 9 through 12: These days were largely recovery days. I was forced to stay in our room the entire time aside from my trips to the patient room for my eye injections. Though my eyes made a great recovery, they remained blurry and sore until Day 12, when they finally started feeling normal again.

Day 13: Released from house arrest! The doctor finally cleared me to go outside, which felt amazing. We celebrated by going to dinner at a Japanese restaurant with patient coordinators, Carol and Patrick.

Day 14: I once again underwent comprehensive eye testing to determine what, if any, eye improvements I experienced. Though I won’t see the full impact of the stem cells for three to six months, I am thrilled to report that I’ve already had visual improvement all the way around. Most promising are the results that measure visual function, which tests the connection between the optic nerve and the brain. It nearly tripled. Not only does this mean that the stem cells should do very well in these upcoming months, but I already have an easier time adjusting to different lighting. For example, today we went to a Confucius temple where it was really bright outside and extremely dim inside. After about a minute, my eyes were able to adjust. While I couldn’t see everything IMG_1908in the room, I was able to see a lot. This is something I haven’t been able to do for years, at least since the chemotherapy.

Clarification: Based on some of the questions I’ve been receiving, I realize I ned to make this more clear.  I STILL have RP and my vision is still quite limited. The surgeries aren’t a cure by any stretch. They are a treatment designed to restore some vision (greatly varies depending on the patient and the type and progession of their disease) and halt or greatly slow the progression of the disease.  According to Carol, about 30 percent of patients experience some immediate improvement while at the hospital undergoing treatment, and approximately 80 percent of patients experience improvement during the following three to six months – as the stems cells kick in. In my case, my visual acuity increased by two line – going from 20/70 to 20/50 and my light perception in my peripheral vision improved a little.  Light sensitivity is the biggest issue for me at this point. I now need a lot more light to see clearly and when I go from a well-lit area to a more dimly lit area, my eyes struggle to adjust…if they adjust at all.  But now – post surgeries, my light sensitivity is beginning to increase and my eyes are starting to adjust a little when I go into a dimly lit room. And I’m hopeful this will continue to improve as the stem cells begin to take hold in the next few months – which is where the boost in my visual function comes into play.

Day 15: This morning we head back to Seattle. I can’t express enough how thankful I am to have had the opportunity to access these surgeries and treatments. The staff was incredibly kind and experienced. It was amazing to be in the care of doctors and nurses who know so much about Retinitis Pigmentosa and have so much experience treating RP patients. Again, I will post the backstory behind the treatment center and the mission and goals of the staff next week. And I will keep all of you updated on my progress with the stem cells over the coming months. If you would like more information on the surgeries/treatments, visit: restorerpvision.com

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Healing from the Inside Out

Written By: ingridricks - May• 03•17

After spending four years fighting my RP like I’m in the fight of my life, I’ve started undergoing a major shift.

Thanks to Behnaz Esfehani, N.D., PhD, an intuitive and holistic healer who holds graduate degrees in education, psychology, and naturopathy, I’m realizing that I need to love my eyes – not fight against them, and that I need to stop viewing what I do for my vision as a chore or punishment.

Above all, she’s helped me to understand that I’ve been focusing way too much energy on my eyesight and that many of the things I’ve done to try to “fix” my eyesight have been driven by fear.

There is now a lot of scientific research around the mind/body connection and the power of the thoughts, emotions and energy we all carry inside us as it relates to our health.

Here’s what Behnaz has to say about it:

IMAG0202On the Energy Power of Diagnosis: When I was in graduate school working on my psychology degree, we studied this diagnostic manual—a very thick book that’s all about all the different types of diseases. The more I read and focused on it, the more I started experiencing symptoms and believing something was really wrong with me. There is energy that comes with a diagnosis. If I say, “Don’t think about a lemon,” we start thinking about it. The more we focus on the diagnosis and the things we don’t want, the more we energize them. A lot of people know the enormous power around thoughts and energy, but it comes down to putting it into practice

On Disease Fighting vs. Health Seeking: Disease fighting comes from the same energy as disease. It is this duality that there is something I need to fight. It’s that outside orientation–the metaphor of our bodies as machines. We are much more complex. And as I mentioned above, the more we focus on diagnosis or disease and things we don’t want, the more we are gong to energize them. Health seeking is very different. From the perspective of naturopathy our bodies are intelligent and engage in self-healing. It’s a matter of looking at habits – nutritional, emotional, relationships, and going deeper with that. Medical doctors deal with emergencies and mechanical aspects of our body very well. But when it comes to healing overall – there’s so much more to it. People come to me and say ‘What can I take for this or that?’ I can suggest supplements or some sort of remedy, but that’s only a partial story. I’m interested in working with the totality of you. It’s not just about fixing your knee – because ultimately your knee is attached to your heart, your mind and how you feel about your life.

On Diet: We have such a vastness of information available to us that it’s easy to be overwhelmed. From what I understand, it comes down to taking an inside out approach and listening to what our body is telling us. We need to get quiet with it, experiment and experience firsthand what works for us. It’s all the little inklings we get—such as how we feel when we eat certain foods. A lot of times people think they are using intuition, but they are still processing through filters acquired outside. They think, ‘I should be feeling this way’ or their decision is based on fear or obligation. We’ve got to get quiet upon quiet upon quiet. What is going on right this moment within?
Personally I advocate for a plant-based diet. The research around it resonates with me. But I don’t dis people who think differently. It’s about listening to my body and my values, and figuring out what works for me. I used to get cravings for dairy, but I know I do better without it. I also know my body does better with less sugar. I think it all depends on intentions. What are you trying to do? If I’m trying to do cleansing, I go one route, for day-to-day I go another. I tend to shy away from telling people you should dothis or that. It’s about helping individuals to connect with inner resources and knowingness: healing inside out.

For more information about Behnaz and her intuitive and holistic healing practice, visit her web site.

 

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Healing Our Eyesight – A Total TCM Approach

Written By: ingridricks - Apr• 10•17

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Lately I’ve been concentrating on healing myself from the inside out—with an emphasis on self-love and healthy lifestyle choices. And Lee Huang, my Seattle acupuncturist, is focused on the same thing.

Lee, who worked as an eye surgeon in China before moving to the U.S. and immersing herself in Traditional Chinese Medicine, is passionate about helping patients suffering from RP, MD, and other serious eye conditions and has been seeking specialized training and answers for the past several years. As part of her ongoing quest to learn everything she can about treating eye diseases from the TCM perspective, Lee recently traveled to China to learn from Dr Wei Qi-ping, a renowned practitioner whose family has been treating RP for four generations. The approach in China is very different from the U.S.. It involves comprehensive inpatient treatment for as long as a month at a time, as well as ongoing herbal injections. All of the herbs are customized specifically to the individual patient, with a focus on addressing the underlying cause of the eye disease.

Lee has always incorporated constitutional acupuncture into her treatment protocol – which includes micro acupuncture and electro acupuncture. But this time around, she increased her focus on my liver (my weak point) and the blood stagnation that is limiting oxygen flow and the removal of toxins— which in turn impacts my body’s ability to heal.

Lee told me that the liver, kidney and spleen are all focal points for people dealing with RP. Some of it, says Lee, comes down to genetics. The other comes from environmental factors. And that’s where we can intervene.

As a person who needs to focus on strengthening my liver, here’s what Lee has to say.

  1.  Reduce Stress. I know this is an ongoing issue for me and I’m continuing to work on it. One thing I’ve just incorporated is a daily dance to Abba music with my daughter, Hannah. It takes five minutes and when I’m done, I’m happy and the stress I was feeling is gone.
    2. Take breaks. Lee recommends that I take power nap breaks during the day to provide more balance. She says I also need to take it easier on myself. For example, if I’m tired after a long day, she says I need to rest rather than force my body into mandatory exercise (though exercise is important for circulation and stress reduction).
    3. Diet and Lifestyle Choices. Okay- I already know this, but I continually slip up on the alcohol part (I’m back on track though).
    4. Self Love, which incorporates all of the above.

Here are some great foods for the liver:

  • • Celery
    • Tomatoes
    • Radishes
    • Orange
    • Grape ruit
    • Green beans
    • Cabbage
    • Napa cabbage
    • Goji berries
    • Rose Tea

Here are foods, lifestyle Choics to AVOID

  •  Fatty foods
    • Deep fried foods
    • Spicy foods
    • Alcohol
    • Smoking


Along with these diet and lifestyle recommendations, Lee has customized an herb formula for me that she says should help strengthen my liver (in conjunction with everything I do personally.)

She also stresses the importance of doing daily eye acupressure, and walked me (and Tanya, a fellow RPer who was in for treatment last week), through the key eye acupressure points. (I used to do eye exercises but slacked off and am now back on it.)

Below is a video Lee has made that walks you through the acupressure exercises. It’s worth watching and starting them. According to Lee, school children in China do these acupressure points in class every day. She says they are essential to eye health.

Okay – I’m signing off to do my eye acupressure points. And then maybe I’ll take a quick power nap.

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Tricks of the Trade: Chapter 2

Written By: Jeanne Aufmuth - Mar• 30•17

March post pic

In a perfect world I’d be driving. Picking up at a moment’s notice and taking myself wherever I need to be. In a perfect world I could see my granddaughter’s sweet little face without having to squint.

But this world is not perfect, it’s just our world. And, as I am sight impaired, I have to craft a realm that works to support my deficiencies as well as my strengths.

The RP-minded brain is always in protection mode – I notice this most keenly as I walk the streets of New York. In NYC a red light is merely a suggestion; the masses are fleet of foot when it comes to crossing their busy streets. I myself have one ironclad rule; crossing a street – either red light or green – means putting another body between me and oncoming traffic. Way to throw someone else under the bus (I hope not literally!) but this is my mindset and it’s called survival.

IMG_3885It’s also just one of many survival tools we’ve all learned to utilize in order to cope with our vision. I’ve written about these before – tricks of the trade as it were – but they are essential to managing visual impairment in a sighted environment and worth revisiting. Here are a few of my favorites.

The handicap placard. Boy was this a hard sell. I have an absolute horror of people cheating the system to catch a break, and thus could not wrap my head around applying for handicap status. But a conversation with a wise RP friend turned me around – she not only uses the placard for parking (especially critical at night) but also to board a plane with those who need extra assistance. Canes can confuse people who label you as “blind” and don’t understand when you flip out your book or your iPhone. The handicap placard is a universal symbol saying something is wrong and none of your damn business.

The flashlight. I’ve written about this before but I can’t say enough about this handy little lifesaver. A tiny one in your bag for reading a menu in dark restaurants. Placed in the nightstand for those wee hour trips to the loo. Shining one into the closet to make out one pair of dark jeans from another. Darkened stairs would be impossible without a steady beam to make out their rigid contours. I would be well and truly lost without this perpetually handy helper.

ipad0The iPad. I have an edema that clouds my vision and, more specifically, wipes out my contrast and color perception. Words on paper are hard to make out and thus I read electronically. The Kindle app allows for white writing on a black background which not only aids in contrast but diminishes the blue light problems that plague virtually everyone who uses an electronic device. In addition to the reading I use my trusty Pad to draw, paint, check scores, text, send email and receive calls. I Face Time with my family and I take photos. My iPad is a second set of eyes; I’m grateful to be living with RP in an age where electronic support is readily available.

Sharpies. Color me crazy but I’ve loved them for as long as I can remember. I will not admit to the number of unopened and freshly pointed packs in my desk drawer, but suffice it to say I could open a pop up shop on the fly. Other kids liked crayons, I did Sharpies. Lo and behold they’re still the perfect tool for our waning vision; among other tips I Sharpie my pants labels to distinguish navy from black. You can actually SEE something written in Sharpie – big, bold and bright in an array of magnificent colors. Sharpies are like an old friend who has stood by through thick and thin.

To all my RP brethren I say kudos to making it through each and every day with your own effective moves and relentless fast fixes. Please share some special tricks that may help someone else navigate this constant course!

 

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Who Are You REALLY?

Written By: ingridricks - Feb• 28•17

View More: http://heatherballisonphotography.pass.us/ingrid-2013

We all have those days where our eyesight struggles do us in. And I know from personal experience how easy it is to let the dark take over.

I’m not talking about lack of light. I’m referring to the dark emotions and energy that can consume us—those inner voices that tell us we are worthless, less than, weak and imperfect.

I was having one of those days when I met with an energy healer last week. And the perspective she gave me was powerful. She reminded me of the healing power of positive energy, and the destruction that comes from dark energy. She talked about the importance of meditation and daily gratitude, and about the need to connect with a higher energy source.

Then she talked about the stories we tell ourselves and said this: “Remember that there is perfection in imperfection. So stop judging yourself. And be careful not to view receivership as a form of weakness.”

Her words were so wise and on point that I’ve been reflecting on them ever since. And I’ve been conscious about my thoughts and about the stories I tell myself.

This is the real story of me and it has nothing to do with my eyesight.

I’m strong and passionate, and a big believer in going after dreams and turning them into reality. I’m a memoir author, ghostwriter and narrative writing coach who helps people find healing and empowerment by writing the deeply personal stories they need to tell.

I’m also a wife and partner to my amazing husband, John, a mother and friend to my two beautiful teenager daughters and a supportive friend to my circle of soul sisters. I love impromptu disco dance parties (think Abba), walks on the beach, soaking up sunshine, and a steaming cup of dark roast coffee. I also love traveling and exploring new countries.

We are NOT our eyesight. Our eyesight is just one aspect that makes us the beautiful, unique, perfect individuals we are.

I’ve told you who I am. Now I’d love to here from you. Who are you? What are your dreams? What do you want people to know about you?

Please share your thoughts in our Determined to See Facebook Group so we can all enjoy YOU.

 

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The Self-Care Campaign

Written By: Jeanne and Ingrid - Jan• 30•17

Funny image for blog post

Jeanne’s Take: If ever there was a time to get serious about yourself, it’s now. Not just about your sight, but in full support of your health – both mental and physical – and your inalienable rights as a healthy human being.

Ingrid and I have embarked on a personal mini campaign to remind each other each and every day just how well we are taking care of ourselves. What did I do to nurture my true self? It can be as simple as walking to work instead of driving, or lingering at the family dinner table rather than firing away at a looming deadline.

IMG_6362Years ago I clipped an article called “The New Aging”. A simple little exercise developed by healthy aging expert Walter M. Bortz MD. On the surface it seemed a trifle – assigning yourself points for achieving daily activities in the name of personal longevity. In short: one point for walking a mile (or swimming, biking, yoga, etc.). One point for reading a book, gardening, drawing, playing an instrument or otherwise getting in touch with your cultural self. One point for making love – or “putting your sensual self into action”. And two points for “pursuing the meaning of life”.

The objective is 5 points a day, 35 points a week. And the equivalents are boundless. An amusing pastime, but it’s not the points that truly count. The real emphasis is on your daily daring, and the fact that you’re seizing your moments rather than sliding through life.

I’m consistently surprised at the ease in which days can slip by without genuine focus on personal success in the name of self-care. And it’s time to make a change. Opt not to go to the crowded mall because it’s difficult to maneuver – a unique form of RP self-care. Watch humanity go by rather than texting. Open up to a friend instead of keeping things bottled up inside. There are myriad routes to the essence of self-care and – points or no points – there’s no time like the present to start treading that path.

 

image1Ingrid’s Take: The daily self-care campaign Jeanne and I have started between ourselves has been a Godsend for me. Every time I see her text come through with a small note about what she’s done to take care of herself for the day, it forces me to take a step back and do something kind for myself. And now that we’ve been doing it for a while, I’ve become more proactive about taking time out for me. As Jeanne noted, it’s the small things that matter: choosing to take a walk on a sunny day, soaking in the tub for an hour in the evening, enjoying tea and a conversation with my daughters, sharing a laugh with a friend.

Our self-care campaign has made me more conscious about living in the present, embracing the moments and making them count – especially in light of the dark cloud that has settled over the United States recently.

A little self-care can go a long way each day. It not only benefits ourselves, it helps those we love because when we are in a better space – it’s easier to pay it forward.

Hope you all will join us – and share your self care tips with us here on the blog and through the Determined to See Facebook Group.

Here’s to taking care of ourselves.

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Stress: The New Anti-Stress

Written By: Jeanne Aufmuth - Dec• 06•16

I’ve discovered something extraordinary over the past few weeks: that stress is actually good for me.

img_6047Don’t get me wrong – I am intimately involved with the concept of stress and one’s health, and there appear to be no upsides to how it treats our minds, our bodies and, for us in particular, our eyes.

Stress is defined as a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.

We all have our hot buttons –anything from fitness and financial concerns to family drama and maddening iOS updates.

bd6f7919-1dc3-4a66-870a-864e3b2ccf39It’s impossible to wipe stress completely off the agenda – life is life and with it comes baggage in all shapes and sizes. But who knew that chaos could be so cathartic?

This fall has been particularly hectic for me – a lot of travel and a lot of family events (a wedding, a new grandchild, a small remodel). With all the hubbub I’ve unconsciously put aside my relentless concerns for my waning sight; over whether or not I’m taking the correct supplements, over having to beg for rides, over how to navigate a crowded airport or a darkened theater.

Bottom line: I haven’t had time to worry about my eyes and, surprise surprise, the industrious and marginally manic me has been far happier NOT focused on the focus of eyes.

img_5947It’s not rocket science  – naturally one set of busy supplants another. But the reality is I’ve stopped agonizing over something I can’t control in favor of the things that I can. And I like it.

I’m not touting a stressful lifestyle, that would be unwise and unfair. But I am suggesting that taking a step back from the daily – perhaps hourly – worry over my condition has given me a clearer perspective, a renewed sense of purpose and an overdue attitude adjustment that’s reaping nothing but mental rewards.

 

 

 

 

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Giving Cannabis a Try

Written By: ingridricks - Sep• 23•16

cannabus-1

Yes. I’m dong it—both CBD, the non-get-you-high part of the plant, and THC, the feel good part of the plant. And I’m taking them in the name of both my eyesight and my life.

I’ve got Sandro Pretolani and Carrie-ann Sharpe-Musselman to thank for this because Sandro shared Carrie’s post in the Determined to See Facebook group a couple weeks back about how she’s been preserving her vision since turning to marijuana. That reminded me of a study that was done a couple of years ago in which CBD was found to preserve photoreceptor cells in lab rats). And it got me reaching out to other RPers who have turned to marijuana and swear by it for eyesight preservation. Carrie has even devoted a new Facebook Group to it and it contains lots of great information. If any of you are interested in joining. Here’s the link.

cannabas-2It also got me doing some research into both CBD and THC for triple negative breast cancer (TNBC)—a really unpleasant form of breast cancer that I was surprised with last Thanksgiving. And as it turns out, there are several western medical studies indicating that both have been shown to fight TNBC.

CBD acts as an inhibitor to metastasis of the cancer cells. And THC has been shown to actually shrink tumors. Yes…. more research is needed for both eyesight preservation and cancer—though given the control big pharma has, I’m not sure when that will ever happen. In the meantime, considering that I really want my eyesight and that my only other option re: the “c” word is to be doused with poison again should it reoccur in my body and hope that it does the trick – I’m all in.

I started with a high CBD product two and a half weeks ago: a 10 to 1 ratio consisting of 25 mg CBD and 2.5 mg of THC. Obviously this is going to be a long-term study for myself, but one benefit I’ve already discovered is that the nightly hot flashes I’ve been experiencing since chemo threw my body into sudden menopause disappeared three days after I started taking the capsules. I’m now incorporating a highly concentrated THC oil generically termed RSO (Rick Simson Oil) after Rick Simson, a guy who reversed his metastasized skin cancer using heavy does of the oil. I’m going for the maintenance mode — about a drop a night – and made sure to get a strain known for the relaxation it brings on. I figure it will  help with the occasional anxiety that creeps in. NOTE: for the THC, I’m using the maintenance dose recommended by Rick Simson. AS for CBD, I’m winging it.

Luckily I live in Seattle, where pot shops are now as common as coffee shops.

I’ll keep you all posted.

 

P.S. I’m also continuing to focus on my whole body health – mind, body and spirit. I eat a plant based diet (with a little salmon tossed in), work out daily, meditate, think positive and ENJOY LIFE.   I know it all goes together.

 

PS.

 

 

 

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Tripping ‘Round the World. Literally.

Written By: Jeanne Aufmuth - Jul• 05•16

iceland beachI have travel on the brain this summer. Most people do, as the summer months are an ideal time to step out of the daily routine and explore a great wide world that offers so much in the way of alternate vistas, unusual cultures and effortless relaxation.

But for my part travel is feeling more taxing than relaxing. As my peripheral vision narrows and my contrast dims, the planet’s glorious colors seem muted and relentless footprints are edged with fear not freedom.

Having just returned from two weeks in Sweden and Iceland I’m still basking in the glow of a truly unique adventure. Yet on this particular journey I took fresh note of the strain that a new environment puts on my eyes and consequently my psyche. Dark corners are perilous, every step is guesswork, and crowded airports are throbbing with tension rather than anticipation.

There’s a silver lining to the less sighted art of travel; improbable but true. Majestic rushing waterfalls are undeniably more profound to a traveler whose backup senses are intensified – where the pulsing pounding sound is equal to the thrill of the sight. I can sniff out a good fried fish shack at a hundred paces. And food even tastes brighter and more flavorful – lamb’s heart tartare anyone?

iceland signsThere were down days – there always are. I slammed into a cleaning cart in a mood-lit hallway, and tripped and slipped my way down a muddy, rain-soaked path at an ancient Icelandic hot springs. With each low I was reminded of a recent Facebook post from a wise RP friend. To wit – focus and thrive on what you CAN see and CAN do, knowing you may not always be able to do so. I strove to focus on my good fortune – the sheer physicality of travel, quality time with my beautiful family, and observing foreign customs through my own unique lens.

In conclusion? I won’t stop. None of us should stop. RP can rob of us our sight but we mustn’t let it dictate or obliterate our lifestyle nor the passions that are solely, inimitably us.

Let’s get out there and show the world just what were made of!

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