Health

Ehlers Danlos Syndrome and Hearing Loss

Ehlers-Danlos Syndrome can cause a defect in the sound conducting mechanism of the middle ear, and which may result in hearing loss. My “good” ear has been crackling and feeling less good. I see an ENT regularly and have shown a steady pattern of loss in both ears, predominantly my right ear.

What seemed like a normal follow up to see why the tinnitus and crackling has worsened in my better ear, ended up in receiving some surprising news.

My last hearing test was just 6 months ago and it is evident that there has been progressive loss. My doctor said she would not usually advise hearing aids at this level yet but considering EDS and the obvious progression, her opinion is to start now before it gets worse.

Today is one of those days where I feel just completely defeated by my body. The idea of hearing aids at my age…. but I will rock them. My purpose here is to help others like me to feel beautiful, strong and supported. So, I am taking another hit for the team.

Anyone else out there have hearing aids?

Health

Grieving Your Past Life and Accepting the New

I remember the days when I was a social butterfly. I was building my empire, helping the community and I knew everyone. I truly thought I had so many friends. It was not until my health was at my worst when I realized that I actually only had a handful of real friends: Those who visited when I had open heart surgery… Those who came by when I got my pacemaker…. Those who checked in on me… Those who were there during the low times.

Someone healthy once said to me that people get sick because they want attention. That could not be further from the truth. You do not get attention when you are sick, you get dropped and become a has-been. You are forgotten and realize most of your friends were only drinking buddies or you were their wingman. Out of sight, out of mind. People move on from you and gravitate toward a replacement. I had a career that was flourishing. I was traveling several times per year, all expenses paid for. I was challenged, inspired, thriving and growing. But my health always catches up. It always knocks me down, no matter how high I climbed.

Typically, I quietly climb back up. I kept most of my health to myself besides major things that were hard to hide. I masked my symptoms with caffeine, marijuana and alcohol. Depression was always tucked away inside. I never slept and I resented my body.

This time, I didn’t climb back up. I accepted it. I embraced it. I shared my story and my truth so that others didn’t feel the need to suffer silently like I did. My career fell apart.

Tyler Durden: It’s only after we’ve lost everything that we’re free to do anything. -Fight Club

On the plus side, when my health deteriorated, I realized who was important. I realized I wasted precious time with the wrong people when I had amazing friends that were there all along. It reminded me about quality over quantity.

I have learned to change my perspective. I may not be the career fueled woman I once was but my passion has never skipped a beat. I remind myself how grateful I am to now live a genuine life, with no toxic friendships, no false relationships, nobody with a hidden agenda. My life is a challenge but it is real and so are my relationships.

When you find yourself in this position, it’s a chance to reinvent yourself. You reevaluate everything. You cut the toxins out and you ask yourself, what do you truly want? How can I touch lives and make a difference?

I may be grieving who I once was, my fair-weather friends, and my fast-paced career. However, I am excited to see how my new journey unfolds and where life will take me. I feel my purpose needed to be more meaningful. I was lost in the fun, excitement and the haze of fake friends and couldn’t see what I was meant to do. I was meant to change the world, to help others and to make a difference… no matter how small. Even if I just pave the way.

Health

Unconsented Pelvic Exams

*Sharing my homework assignment with everyone because it matters and I always choose important topics.

Intro To Healthcare Assignment: Ethical Issue

Ethical issue: Performing unconsented pelvic exams on women while they are under anesthesia is legal in 45 states.

My Perspective:

Medical students are practicing pelvic exam while patients are under anesthesia. During Shawn Barnes’ third year in medical school, he was asked to and did perform pelvic exams during his obstetrician and gynecology training. Once anesthesia was administered, the attending physician or resident would ask Barnes to perform a pelvic exam for educational purposes.

When later voicing his opinion of this ethical conflict, Barnes learned that this was, in fact, a standard protocol to perform unconsented internal vaginal exams on unsuspecting ob/gyn patients. Many people outside of the medical field are shocked and horrified to learn that doctor-patient trust could be violated in this way.

Why wouldn’t the doctor or the hospital require consent? It has been nearly a decade since Shawn Barnes voiced his opinion and nearly thirty years since this topic has first been discussed and yet these exams still occur in 45 states, legally. Simply put, we need to end the practice of uninformed and unconsented internal vaginal exams.

I can’t help but wonder if I have ever had an unconsented pelvic exam during one of my many ob/gyn surgeries. Please contact your local government.

*Hawaii, California, Illinois, Virginia, and Oregon have outlawed the practice

Missouri
Office of Missouri Governor Michael L. Parson

P.O. Box 720
Jefferson City, MO 65102

Florida

Office of Governor Ron DeSantis

State of Florida

The Capitol

400 S. Monroe St.

Tallahassee, FL 32399-0001

Sources:

https://journals.lww.com/greenjournal/pages/articleviewer.aspx?year=2012&issue=10000&article=00028&type=Citation

https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12441

https://www.ncbi.nlm.nih.gov/m/pubmed/12592274/

https://www.ncbi.nlm.nih.gov/m/pubmed/16206868/

https://medium.com/@holympus/its-time-to-completely-stop-unconsented-pelvic-examinations-cef80c38b334

Unveiling Invisible Illnesses

If I Only Had a Heart

The #myedschallenge for today is “if you could rid yourself of one EDS symptom, what would it be?

Without a doubt, I would rid myself of heart issues. I will gladly take the pain, muscle aches and spasms, joint hypermobility, subluxations, migraines, gastrointestinal issues, brain fog and so on. I have always known my life with heart issues.

I remember playing on the softball team in 3rd grade, complaining of my heart racing. “Keep running, kid. That’s normal,” my coach said. It wasn’t until I was 15 when we realized my heart rate was hitting the 300s and I had SVT and WPW. I remember being in my 20s and dancing with my friends, periodically going to the bathroom stall to slow down my heart. I just wanted to be normal.

Between multiple surgeries, hospitalizations, ER visits and doctors appointments, these heart issues have robbed me of so much of my life. These heart issues affect me every day.

My heart valves leak and have hypertrophied, requiring an inevitable 2nd open heart surgery one day. I have already had 4 cardiac ablations and refuse to do a 5th as it would make me 100% pacemaker dependent. My aortic root is dilating, a common issue with EDS. While I worry about my heart rhythms, blood pressure, arrhythmias, and valves, I also have worry about the possibility of aortic dissection.

I put my hand on my heart, and though battery operated, I am still so grateful that it pumps. I am grateful that I am here to be a mother and a wife, to share my story, to raise awareness, advocate and educate. I am grateful to breathe in the warm Florida air, even while my heart races and my chest aches. But what I wouldn’t do for a healthy heart….

Healthy Food, Sweet Tooth

Oh, Honey!

Check out these delicious and clean-eating recipes without refined sugar.

*This article was also published in April 2019 issue of The Beachside Resident


Banana Affair
Peel one side of the banana off and make a cut going down the middle, like a hot dog bun. Stuff the banana with almond butter (peanut or cashew butter works too) and dairy-free chocolate chips. Top with coconut flakes and pop it in the oven just long enough to warm up and melt the chocolate, while toasting the coconut flakes. Top with cinnamon and drizzle with local honey to finish this mouth-watering melted banana from heaven. I tried a banana similar from the @Eatqual vegan food truck and ever since have been making my own versions.


Boujee Bread
Any baguette or sprouted grainy bread of your choice will work.  Cut it down the middle and add a small about of Earth Balance (dairy-free) butter. Next, top with fresh raspberries (blueberries, peaches, or jam will also work) and top with brie. Warm it up in the oven until the brie melts. Top with local honey, cracked pepper and fresh basil or sage. This is the perfect sweet and savory treat that will also impress a house guest. 
 
Smoothie Bowl
Blend ice with frozen berries, almond milk and acai. Make sure the consistency is thick, but I always fill the bowl and put it in the freezer to thicken it up more. When ready, use whatever you have on hand in your kitchen: top with fresh fruit, chia seeds, granola, coconut flakes, nuts, seeds, cinnamon and of course local honey. This is great to eat in the morning to start your day off but I also enjoy it in the evening instead of ice cream. 
Health, Unveiling Invisible Illnesses

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is an inherited heterogeneous group of thirteen subtypes in which abnormal collagen synthesis affects connective tissue: skin, bones, ligaments, blood vessels, organs and tissue. Collagen is a major structural component of the body. Danish dermatologist Edvard Ehlers recognized the condition in 1901. In 1908, a French physician named Henri-Alexandre Danlos suggested the features of the syndrome. Weak and structurally abnormal collagen may result in flexible and loose joints, poor wound healing, fragile blood vessels, ruptured or prolapsed organs, dysautonomia and many other various health conditions.

The inheritance patterns vary based on each subtype. Autosomal dominant inheritance means that just one copy of an altered gene can produce the disorder. For other subtypes, the disorder can be inherited from one affected parent and some even develop new gene mutations that occur with no family history. The gene mutation for COL1A2 can be found on chromosome seven, altering the collagen found in most connective tissue. This particular gene is associated with cardiac-valvular EDS, atypical Marfan Syndrome and Osteogenesis Imperfecta. There currently is no known gene linked to the most common subtype, hEDS; however, recent testing and research has been launched to discover the gene associated.

The launch collaborated with Ehlers-Danlos Society will collect enough data to gain more knowledge of this rarely diagnosed disorder. Different genes are associated with different subtypes and symptoms can range from mild to life threatening. 

For formal diagnosis, a referral to a geneticist is a start. There is test called the Beighton Scale, which has helped assess hypermobility since 1998. Medical history is also important for diagnosis. There is also a list of diagnosis criteria for each subtype that require a patient to meet a certain amount of history and symptoms. Vascular EDS can be potentially fatal, which makes proper diagnosis and subtype classification important.

Ehlers-Danlos Syndrome is not curable but symptoms may be managed with a team of specialists. It is a systemic disorder, meaning that multiple systems may be affected. Many patients see a range of specialists such as pulmonology, electrophysiology, cardiology, gastroenterology, neurology, pain management and so on. Specialists involved depend on the patient’s specific symptomatic issues that are a result of the connective tissue disorder. 

The current statistics for the more common subtypes are 1 in 2,500 to 1 in 5,000. Some of the rarer types only have a handful of documented cases. However, recent clinical studies show that EDS is more common and not so much rare as it is rarely diagnosed. This makes awareness, education and advocacy so important, in order to better understand and diagnose this disorder. 

 

 

 

 

References:

 

The Ehlers-Danlos Society. What Are The Ehlers-Danlos Syndromes? Retrieved from https://www.ehlers-danlos.com/what-is-eds/

 

National Library of Medicine. (April 2019). Genetics Home Reference: Ehlers-Danlos Syndrome. Retrieved from https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

 

Health

May is Ehlers-Danlos Awareness Month

May is Ehlers-Danlos Syndrome Awareness Month. WTF is EDS? I made this graphic to explain more about this congenital connective tissue disorder.

Why are there so many symptoms and complications? Because your body is made of connective tissue, therefore it is a systemic clusterfuckery of the body. “Have you tried changing your diet?” Actually, I have to eat a strict diet to avoid worsening symptoms due to sensitivities, so I already have cut everything out and I even eat kale.

Unfortunately, EDS is not something you can beat or recover from. There is no cure or treatment. You can manage symptoms and usually that requires multiple specialists: cardiologist, pulmonologist, neurologist, gastroenterologist, ALL THE OLOGISTS.

Not all EDSers are alike. With everything, there is a spectrum of various levels of severity. We call ourselves zebras because in the medical field, healthcare providers are trained that if you hear hooves to expect a horse, not a zebra; we are the zebras that are often missed. Awareness is important so that 1 in 5,000 are not dismissed and medically neglected because they “don’t look sick.”

Related blog posts:

The Cycle of Grieving with a Chronic Illness

How To Be There For Someone With a Chronic Illness

Health, mental health

The Invisible Diaries Podcast and Show

I am so excited to announce the upcoming launch of a show with my dear friend Amber, called The Invisible Diaries! The show will be shedding light on invisible illnesses. We are going to interview guests as well.

If you are interested in being on our show, please emails us at theinvisiblediaries@gmail.com and introduce yourself.

Instagram and Facebook Daily Topics

  • Mental Health Monday – Mental health awareness, support and education
  • Teach Me Tuesday – Education, information and learning
  • Words of Wisdom Wednesday – Quotes and inspiration
  • Thankful Thursday – Focusing on the good and finding balance
  • Favorites Friday – Favorite things and product highlights

Stay tuned and follow us on social media for updates on our official launch!