Yosemite Winter 2017

Another trip to Yosemite with my bestie completed. Every year we are surprised by the differences each year. It just does not get old for me. Some years have been dormant and desolate, needing its thirst quenched. A season like this, the thirst is being quenched with purifying waters which should reveal the enrichment of life—whether new or old. It makes me reflect upon the transitions of life. There are moments in life where everything is beautiful, seemingly unflawed until the storm or fire rolls through, pruning the good and the bad. I view Yosemite quite like how I see life each day. There are so many mysteriously beautiful parts yet there are bruises from the battles of the elements much like life itself. It all depends on perspective and attitude on how you view things. I try to strive to find the beauty in everything.

I can’t say enough how incredibly blessed I am to have a friend that has chosen me to travel with her. I am thankful for keeping dear to me selfless close friendships. Those are rare to find. They keep me smiling and laughing—to remember who I am truly am and strive to be.

 Life lately for all of us has been mind numbing, blinding… rough is putting it lightly. I am not going to get too personal publicly, but there have been instances in my life and others I never thought I would witness or experience. As cliché as it sounds, never say never. Any scenario in life is possible, but it is how you respond and learn from such trials and transitions. Grow from it. Don’t let pain or hate callous you. We have plenty of that swarming amongst us. 

The sun shines not on us but in us.

John Muir

 

 

 

 

 

More photos here –>

1800 Miles

Beautiful San FranciscoThank you for loving concern, prayers, thoughts, etc. Today was a long day for everybody. My dilation was delayed due to unexpected surgeries that took priority over my procedure. I was under for 2 hours for a 30-45 minute procedure because my wonderful GIs went very at a slower pace. This was my first official “real” dilation in my entire life with EB. They were terrific. It was also my first time being intubated by an anesthesiologist, too. Everything was done with a wonderful tender hand. I feel like a new person. Back story: I had an attempt for dilation in Utah with the best GI doctor in the state, but he felt was not experienced enough in Epidermolysis Bullosa. Furthermore, he felt he would perforate my esophagus. While feeling hopelessness after his decision, I am very thankful he turned me away for future procedures. I’d rather be miserable awaiting that special person to help me than deal with irreversible consequences. His heart was in the right place.

What I am about to say is not a cry for attention or pity: It has been a challenging 6 years, honestly. I have shed many tears. Had many counseling sessions. There were many scary moments within my own head. I know a multitude of us have gone through numerous events in life. Things we never thought we’d go through or live through. Little by little, my social life has been shorten just trying to survive. Thankfully, I have friends’ that have chosen to stick close even when I just wanted to hermit. I have not been the best daughter, friend, stranger, etc.

I waited 3 years for a proper diagnosis from hospitals back at home to explain why my chest was giving me issues (since I had not experienced a very small stricture–I was stumped.) I was just given pills or diagnosed with anxiety. I had anxiety and some panic attacks, but I wanted to know why. I only received 3 hours of sleep per night. Food pooled in my upper chest. I felt an elephant on my chest constantly. I was “hangry” all the time. All the time. I suffered dehydration. My stomach grumbled every hour around the clock. Yes, it has sucked. On top of that, I have had dealt with personal battles from different directions. I would rather not delve into it publicly online just yet, or at all, but I am letting you know, you will preserver.

Sometimes I only post happy shiny posts. Social media really allows us to filter our lives to “perfection”. People get this idea I have money, that I can travel whenever I want. Again, all blessings of dear people who have been beyond generous. My travels have been pleasure, but mostly medical as of late. As of now, I get $17.15 per month for my personal income. It takes me over a year just to save for small selfish purchase for myself. I am not complaining, just being raw. This is my reality. I sometimes forget, too. There’s no such thing as perfection. I simply wish to show positive more than negative; it’s what I hold dear to most often. We deal with a lot negative in our world today. Without some of those flaws, bumps, and cracks, we would not have a new stepping stone/hurdle to climb to a decent outcome and outlook on our strength. [Un]fortunately, discomfort is a necessity to get ahead and teach us something new–rebuild grow, renew. Without a climb, how do we build muscle? Speaking within self. Through such negative or discomforting moments, I usually refrain from spreading it, or become calloused by the discomforts of life. It causes a cycle of a hardened shell. I am not guiltless of this. It happens. I would much rather smile through it than be unhappy.

Ali had fun on the beach!

Stanford Hospital experiences, for the last 2 weeks, all around have been phenomenal. Every doctor, nurse, coordinator, social worker… truly a godsend. They kept telling me how blessed they felt coming across me as a patient, but I felt they were the angels. I saw their sacrifices, not just for their families but their “hospital family” as well. With with my depression and lack of self worth the last several years, I thanked God wondering how I deserved such personable loving people? The true medicine was the laughter we shared, however, just listening to each person’s story was an eye opener leavinng me inspired.

I am going home with a full heart…

Long Handled Spoon

Sometimes things in life are not always fluffy bunnies, rainbows, and butterflies. I try to thrive on writing about positive things in my life, but that would not be practical or relatable.

There have been awakenings in my life that are becoming more prominent with age. I have held onto rather unhealthy relationships in my life, we all have or experience them. My life does not equate as a higher placement than anyone else does. However, I do believe I have issues being an enabler of people’s weaknesses’ especially when it comes to using a person for their benefit. Trust me, close friends’ have told me I need to stop “being so nice” over the years. I am learning a healthy boundary amongst certain people in our life is okay. Years ago, I felt as if I was letting a person down if I did not bend over backward for them, though, I was feeling major discomfort. In most instances, I felt as if my actions to please that person was from my heart and would suffer whatever discomfort I endured. Thing is, would that person do the same for me? The likelihood was null. That does not mean I expect something in return every time I do something from my heart for someone. You know the genuine difference when that person’s intention or need is authentic. However, if that relationship is a one-way street, that can be incredibly dangerous to all parties.

There had been an uncomfortable and disappointing situation I was put in the middle of a few months ago. I was angry, hurt, disappointed, but of course, I was going to do anything for that person. It was revealed to me vividly in my heart, I need to speak up for myself, finally. One of the said parties ended the relationship between us because they were not getting what they needed. The old me would have blamed myself endlessly, trying to win the approval of that person back. I allowed myself to feel the emotions for a good solid 2 days before replying with a respectful letter, but strictly standing my ground, in love.

This journey has been extremely painful to deal with because that person was dear to me, but I hope I can see I am capable of loving even when sometimes we must part ways, whether with a family member or friend. We won’t please everyone in this lifetime. There are times we have to feed them with a long handled spoon, spoken wisdom of my grandmother.

Yosemite Winter 2016

Beautiful, beautiful Yosemite we meet again. I can recall seeing Yosemite semi-snowy back in 2010 and 2012. When the drought started taking a toll on the west, Yosemite just appeared in need of precious moisture. My friend, Saries, has experienced one proper snowfall in Yosemite in the 90s, but I had not experienced it myself. Cold, cold nights, wind, rain, but never a proper snowfall in my home state, California. We both wanted to experience a wonderful proper snowfall, a snowfall that actually stuck. The forecast was not promising a few days before my arrival. We arrived in Bass Lake where Saries’ timeshare is located. There were patches of snow on the ground. Still, we did not get too excited quite yet. The next day, we drove to Yosemite Valley, it was mostly cloudy, cold, and some low clouds. The air was extremely brisk…

The following day, I woke up extremely ill, unfortunately. I was so disappointed as I was looking forward to exploring much more of the park. I could hear the relaxing pitter-patter of continuous rain upon my room’s window. Though I was completely weak and unmotivated to move, hearing the simplicity of rain put a pleased smirk on my face. I exhaled in bliss, “Finally…” Resting in my room the entire day, the rain continued into the depths of the night. The next day, I felt a surge of energy and less fevered. I was not going to allow illness ruin our trip. We left early AM since sundown came early. We gassed up and headed onward from Bass Lake. I vaguely noticed two men dressed in bright yellow, but my mind did not want to comprehend the possibility. I did not say anything to Saries because I didn’t want to cause excitement then it was nothing spectacular. As soon as we hit around 4,000-4,500 feet, “Are these… flurries?” Saries asked. “Yes…” I could feel the tension of childlike excitement between the both of us. As we climb higher in elevation, the road starts to steadily turn white. The flurries were transitioning into snow flakes. Up ahead, there was a highway patrol vehicle and a ranger directing traffic to put on snow chains! Remember those two men dressed in bright yellow attire I mentioned earlier? They were who I thought they were. Chain installers. We headed back down that way so they could install chains upon her car’s tires. After the successful installment, we headed back up. We were super quiet for a few minutes, and if we are both quiet while together, something is brewing. Saries finally let out a high-pitched scream of excitement. I could literally feel it brewing and was not surprised by her exclamation. She screamed enough for both of us, honestly. I laughed so hard. Snow flakes. Large small hand sized snow flakes falling. I pictured us in this snow globe. It was completely dreamy…

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California West Coast Exploration

There had been some medical business I had to attend to in Northern California back in November. I had asked if my bestie if she could accompany me and drive me up from Los Angeles to my destination up north. Of course, with her kind heart, she agreed to the long travel. We, of course, made it a small road trip of great adventure coming back down to Los Angeles. For several years, we have been wanting to do a proper coastal trip from Los Angeles all the way up the Oregon coast. This was a last minute trip for me, so obviously we could not extend our trip, but we could not just pass along such beautiful spots.

Let the photos speak…

2015 EB Awareness Week

 

What is Epidermolysis Bullosa (EB)?

I am going to describe EB in my own words and terminology. Please excuse any incorrect ways I might describe EB in advanced. To clarify, I am also going to describe EB from my own mental and emotional prescriptive. I will share an example to give a small depiction of what EB entails—the bad and the good. If I say anything that offends you personally, it is not aimed to offend anyone nor am I saying this how you should live. These are my feelings.

Epidermolysis Bullosa is a genetic skin disorder that affects the connective tissue between the epidermis and dermis with constant blistering. It can also cause blistering of the mucosa, from eyes to the mouth to the anal region. The esophagus suffers blistering (for me, the most painful next to eye abrasions) which leads to esophageal strictures. A simple meal can turn deadly due to choking and blistering that can obstruct the passage. The average adult esophagus is 14-20mm, but someone such as myself with EB is only at 2mm (5mm after surgical dilation.) The eyes can have abrasions which can cause abnormality to the eyes cornea. Depending on the severity of the abrasion, it can lead to permanent damage (scarring) which can limit the sight or cause complete blindness. Eye abrasions should heal within 2-3 days but with EB it can take up to 1-3 weeks. No light should be let into the eye. The best healing method is being in a dark room with the eyes closed. Aside from the excruciating pain, the mental anguish can be crippling being further confined.

There are several subtypes, but hundreds of mutations of the EB gene. In my subtype (recessive dystrophic), I am missing the “hooks in my velcro” (collagen VII), that allows the skin to stretch with friction and touches. I am often left with scarring which has caused my hands and feet digits to become “mittened” or webbed (complete syndactyly). More commonly seen in recessive forms of EB, the scarring can limit mobility and function of limbs. In severe cases, the deformities and/or discomfort can cause limitations to walking for long periods (i.e. why I have used a wheelchair.)

There is some envy behind the simplicity of those who can get to shower within 10 minutes or dressed within 5 minutes. I don’t want to make it sound like I am completely immobile because I am not. After the years of the process day in and out, you would think one would be used to it. Never. I love showers. I love the feeling of being free of my gauze, seeing my actual skin. Mentally and emotionally, I loathe the process. Not so much the preparation of the gauze, but building my mental state to withstand the excruciating pain that jolts through me every dressing change. The rushes of adrenaline are exhausting. Even taking off day old gauze can be a detrimental process in itself. If a non-stick pad that covers my wound from sticking to the gauze shifts, sometimes I am unaware and will tear off completely stable “strong” skin around the wound. I have screamed and trembled with anxiety, nearly letting out the profanities swirling through my head at that moment. On rare days of fatigue, my emotions can range from a mixture of rage and sadness. I never want to take out my pain on anyone around me, not to say that has not happened before. No one deserves to see that side of me, the side I loathe feeling. I chose not to give too much of my precious time.

Wound care is a tiresome job for me and my caregiver (usually my husband). From preparation to finishing my wound care by the caregiver can take 3 hours, sometimes 2.5 hours on a good day. If I do it entirely on my own with unopened wound care supplies, it could take me 6 hours because of the webbing of my hands slows the process. It can be frustrating when people say, “You’re so lucky you don’t have to go out to work.” Words of ignorance but my survival of my disorder has been a full-time job. Does it impede my social life and those around me? Greatly. Growing up, people did not understand why my mom or I could not meet or talk on the whim. Even with an explanation, some people did not want to grasp or even believe it. That in itself can make you feel worthless. You can really find out who really listens and cares when you or someone dear to you has health challenges.

Epidermolysis Bullosa is much like a full-time job for both patient and caregiver. There are very rare moments when you can live life without thinking about EB. Every movement has to be planned out in my head so I don’t upset my skin somehow. Even days where I am feeling “healthy”, I have to consciously be aware of what to do and what not to. Throughout my childhood, I did not fall a lot, but when I did fall, they were very traumatic falls—with the full-on gore of blood and missing skin. Because of those falls, I have to remember how and why those falls occurred.

A major use of our toes is for balancing. EB has caused my toes to mitten due to the scarring. My toes started fusing together from the early age of two. Before different wrapping methods were practiced to slow the scarring of the digits, surgery was largely recommended when I was younger. I had surgery on my right foot to separate my toes and straighten them. The doctor put me in a cast, which over the years, doctors realized that was not a good idea for someone with EB. When the cast was removed, there was a 6-week old xeroform dressing healing into the wounds of my foot. Xeroform is a type of pliable petroleum based wound dressing. From my own personal experience, I am not fond of the dressing, especially for surgical wounds. They dry out too rapidly for me personally. The doctors did not give me pain relief for the nightmare under the cast. The xeroform that was essentially now becoming part of me, literally, was being ripped out of my wounds. Wounds that were nearly healed were reopened, forcibly. I was only two, but I will never forget my heel was completely red raw and bleeding. Lessoned learned: never wear a cast when you have a genetic disorder that constantly breaks down and needs care, every day. Not only did that cause my foot to become worse before the surgery, the surgery did not help my foot’s deformities as it healed. As I grew, it was difficult to do physical therapy on my foot without causing blisters. My other foot that I decided against surgery upon has scarring and some fusing of the toes. It is more stable, balanced, and less painful. The foot that had surgery, the toes are now in a “W” shape beneath all the scarring. My toes are basically pushed upward and toward my body. My shoe size is women’s 6 (without socks and gauze) but if my toes were stretched out they would be an 8 or 9. Doctors are usually amazed how well I can walk, though, it is limited. The metatarsophalangeal joints are constantly under strain because of the locked bent position they are in. A past doctor described it is equivalent to walking on the tips of my elbows.

Sharing the tidbits of the challenging parts living with EB, shows the “bad” about living with EB. What is the good that comes from it? With anything challenging in our lives, we come to learn the good from the bad. There are uncountable times people have tried bringing me down, telling me I cannot do this or should not do that. This only made me stronger to take chances which have given me a fulfilling life. Granted, I don’t like what EB can do and has done, but I accept the challenge, to kick its butt! I love seeing the miracles that are gifted to me each day. God has shown His kindness and mercy through my life and the wonderful souls that I have grown to know. If it were not for my disorder, my life story would be completely different. For the better? Maybe. Maybe not. To me, I live in this moment of greatness given to me, making the best of each day even during those rough days. Health challenges of any sort should not define who you are, it is just a small part of you. EB seems vast, but it is just a small part of me. EB has made living challenging, but I have not allowed it to disable me.

I try not to allow EB define me as someone that is just “a disable”. Put your all in anything, you will overcome.

We beat EB every day.

Review Time || Skincare Gifts from Beauty by Britanie

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The beautiful and wonderful Britanie of Beauty by Britanie was having several wonderful giveaways months ago which I entered in. As a long time follower, Britanie’s passion for health (body, mind, soul) and beauty always intrigued me, inspiring me to further look into  more skin care products. To my surprise, I was chosen as a winner for an amazing package of love! Thank you to Britanie and Wild Ginger Apothecary for the lovely products! I wanted to give these wonderful products a try for a few months before writing small reviews on each product. A couple products not reviewed were given to a friend or family member.

Brittanie’s Thyme Organic Balancing Toner
BY: BRITTANIE’S THYME

 

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The love for this toner has become very real. I have very oily skin and if there is a product my face dislikes, my face becomes oilier. I have not experienced any of this with Brittanie’s Thyme’s toner. It actually has balanced my face’s oiliness to a healthy moisturized glow. The smell of this toner, it is so intoxicating to my nose-feelies, seriously. It removes any residue of makeup and/or cleanser without unpleasantly stripping the skin at all. The evenness of my skin has become smoother and more radiantly glowing! I highly recommend this if you have normal to oily skin.

Components of love: Distilled Aqua (Water), Organic Hamamelis Virginiana (Witch Hazel) Distillate,  Organic Mentha Piperita (Peppermint) Oil, Organic Citrus Sinensis (Sweet Orange) Oil, Organic Rosa Damascena (Rose) Flower Oil

Gluten-Free / Vegan.

Brittanie’s Thyme Organic Eye Oil
BY: BRITTANIE’S THYME
This eye oil has only two ingredients, but they are powerful enriched nourishing fatty acids that help fight against the development of fine lines. One of the ingredients, sweet almond oil, is often used in facial massage and as an eye makeup removal. I used the eye oil to remove a few coats of mascara effectively without overly stressing the delicate skin around the eye. Due to its lightweight consistency, it is extremely moisturizing but not heavy, so it won’t mask or clog the skin’s pores. After using it before bed, the next morning there is such a radiating difference. It is especially wonderful for the winter months during dry eyelid season!

Components of love:  Organic sweet almond oil, vitamin E.

Gluten-Free / Vegan.

Schmidt’s Natural Deodorant
BY: SCHMIDT’S

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With my skin breakdowns, I don’t usually wear deodorant at home on a daily basis because of the chemicals and aluminum found in most formulas. The warning labels clearly state avoid broken down skin which is my skin often is with my disorder. If there is an opened cut or wound is unseen, those chemicals are more likely easily absorbed through a cut or wound. This is wonderful deodorant that does not leave your armpits with a dry or wet feeling and is without the harsh ingredients such as phthalates, propylene glycol, and aluminum. Highly recommended for those low-intensity days.

Skin Detox Organic Vegan Facial Soap Unscented Made with Cosmetic Clay
By: Herban Lifestyle

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Herban Lifestyle’s skin detox organic facial soap has become a top favorite for my nightly routine. I have been a huge user of bar soaps made with minimal ingredients, but some can be drying even though they call for moisturizing. With my oily combo skin, they usually upset my skin causing dry patches or increased oiliness. This soap deep cleans, clinging to oil and dirt leaving the skin refreshingly smooth. My face feels toned and moisturized since using this soap. My problem areas such as my hyperpigmentation has decreased in redness and roughness. The oils used in this soap are only the finest and minimally processed organic oils. There are no added artificial fragrances which are helpful for sensitive skin such as mine. The rhassoul clay found in this bar is high in minerals such as calcium, silica, magnesium, etc. Rhassoul clay has been used for centuries for the skin.

Components of love: Olea europaea (olive) oil*, elaeis guineensis (palm) oil**, cocos nucifera (coconut) oil**, aqua (distilled water), sodium hydroxide, rhassoul clay

*USDA Certified Organic
**Certified Organic and Fair Trade

 

 

 

A Year Without Jamie Hartley

 

Beautiful Jamie Hartley

A year without our amazing Jamie Hartley here on earth, but she is still very much remaining in our thoughts and hearts. I am in awe how a year has passed already. Trying to continue life without that person can be so challenging. Some days, it can feel almost impossible, but it is possible. Holidays and birthdays; the special events that bring people together, those memories you have to hold dear. Even in the midst of problematic moments in your life or theirs, remember how you had each other. My plethora of thankfulness to know such a genuine soul—had I not known Jamie, my life would be certainly different, in a negative way. The rawness of Jamie’s passing is still there for me, but each day what felt like a non-healing wound is slowly healing. I have reminded myself how I know Jamie would not want me sad, but it does not lessen the fact I miss her, immensely. If I hear any version of Ave Maria (follow the link to hear her version), I usually have to switch the song because I will weep right there, no matter what the location. It is one of my favorite songs Jamie covered with her beautiful singing voice. It’s just too bittersweet. I have not been a big flower person, but now I appreciate poppies and orchids as they were Jamie’s favorites. Any time I spot one in the wild, I smile.

 

Gifted with a huge part of Jamie’s life this April, was her dog she affectionately called “Poochini” also known as Ali. For me to have her, I cannot put into coherent words, just endless feelings of love. My dog, Luna, has known Ali since Luna was a puppy. They have been bonded for years, so the transition went exceedingly well. Ali has her own wonderful persona, but there is the likeness of Jamie’s gentleness, concern, intelligence, and joyous smiles instilled within Ali. Jamie did well training such a faithful dog. I thank Taylor and Jamie for putting more joy into my life. I hope Jamie would be proud of how I am caring for her Poochini.

Exploring poppies with Jamie

Although I miss you, Jamie, I am happy you are no longer in pain. You fought hard. You never gave up. I am so happy you are no longer suffering. You were just called to the next chapter of something wonderful.

We all love you, Jamie.

Redrock Playground

When I am feeling poorly, I love going on adventurous drives to the unknown. Nature is such a gift to us to enjoy. Earth is one big playground. It is much-like medicine to me. Even if you are not the outdoorsy type, I think it is important to take a moment to quiet the mind, to look around you. There are so many stressful scenarios amongst us, it is often challenging to take a moment to merely look at the moon and breathe. For me, I have always loved the outdoors. Everything about nature appeals to me. I remember when I was a child, I would sit myself near a window and stare at the moon for hours. Just, stare. Absolutely mesmerized in amazement. Trying to memorize each lunar crater placement that my eye could see. It quiets my spirit, giving me that stillness to listen to God while analyzing my growths and weaknesses. His creations brings me back to gratitude when I am feeling ill-tempered. It grows me each time I take an adventure.

Every day, take a moment.

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Health Update

The course of the last several months has been a mixture of fun and health ups and downs. Let’s cover the trying parts, shall we?

My health has been pretty stable for the past 2 years — no cancers and iron level has been stable with yearly intravenous iron therapy and supplements. The past year I have been rather quiet about an issue I have been experiencing internally. I have had a strange lump rollabout in my solar plexus region. The sensation started out feeling small and less troublesome. If I attempted to bend over, it would feel as if a marble rolled from my spine to the front of my chest. It was alarming, but did not hurt. After a few months, the sensations increased and the sternum pressure started. I went to my local hospital’s ER a few times for the fullness sensation I was experiencing in my chest. It felt like I couldn’t breathe, or my chest was craving in. Being safe, I listened to my body. I kept going into the ER and was diagnosed with different issues each time. Though I felt unsatisfied with each diagnosis, I went on living my life and hoped everything would work out itself.

Over the past year, my levels of uncomfortableness increased each day. Sleeping was now a lengthy process (I get about 3 hours of actual sleep per night lately — on a good night.) Laying down was like an elephant was upon my chest. My resting blood pressure would become menacingly low. Not to mention, eating was more of a chore than it had been. Eating binding foods such as breads, broccoli, and quinoa, for example, completely horrendous pressure afterward.

The past couple of months, I had a painful spot on my arm which did not appear to resemble Squamous Cell Carcinoma (SCC), just alarmingly painful. The simple gentleness of fabric brushing against the spot felt like razors. I made an appointment with my wonderful Dermatologist, to perform a biopsy and hopefully remove most of it in one sitting (it was positive for SCC). During the numbing process, I became lightheaded and my chest felt aggravated and heavy, but I could feel myself blacking out. My doctor immediately saw my distress, and helped bring the blood back to my cranium. I spoke with my doctor about the issues I had been experiencing the last year, and he urged me to see my last G.I. doctor, not the local doctors in my small town since they don’t have the specialty to equip my disorder.

After a pre-visit appointment with Gastroenterology, we formulated a plan best for figuring out what may be the issue. Tomorrow, I am going in for a scheduled Esophagram and on July 29, the university scheduled me for an Endoscopy procedure. There is no guarantee whether the Esophagram will answer any questions, but I am praying it does. The exhaustion — physically and mentally — from this has been leaving me on empty. What could it be? There only has been speculation from a few doctors’ and nurses’ that my esophageal strictures (a complication due to Epidermolysis Bullosa) could possibly be worsening and/or developed a hiatal hernia. Whatever the issue, I pray I continue to have faith, strength, and a calm heart.