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….

mental health

How to Work Through a Problem

Life can be unpredictable, chaotic, stressful, out of balance and just straight up crazy. It is vital to our mental health to be able to manage the stress in our lives in a healthy manner. Unfortunately, we are not born with the knowledge of balancing mental health and the inevitable stressors that life throws our way. We surely did not learn this in home economics class either. We are thrown to the wolves and some of us figure it out, while others are hiding in their bathroom with chocolate and tears.

People naturally gravitate towards a way of relief from the lemonade raining in our lives. For some, that relief is alcohol, drugs, shopping, gym, sex, and so on. Addictions come in many forms and with many masks. You may not even realize that you have your own demons because it is packaged neatly in a decorative class that says “Mommy’s Sippy Cup.” Your addictions may be something with healthy attributes, like going to the gym. Only, you work out more than you do anything else and you have developed an obsession with your workout routine, schedule, nutrition and progress to an unhealthy level. Or, maybe you don’t self-medicate but you isolate yourself from your friends, you stop doing the things you enjoyed once, and maybe you started having anxiety attacks.

In a nutshell, stress makes us do weird things. It makes us sick, or sicker. It steals the joy out of life when it is not under control. It tears relationships apart. It throws hurdles in our way and derails our plans. It imprisons us in a haze of distractions while our problems pile up.

In my Introduction to Healthcare class, our first assignment involved the problem-solving process. I am sharing what I learned so that you can apply this five-step process to areas in your life that may benefit from finding a solution.

 

Problem:

 What is your problem? Maybe it is something huge and overwhelming or it could be something small and petty that could get swept under the rug. Regardless of the size, every issue should be dealt with because they add up and they grow. They fill up your cup and overflow. The next thing you know, you are drowning.

Tip: Keep a small notebook. Create lists of goals, tasks, issues, solutions, progress, failures, etc.

Fact: It is okay to fail. Think of it like you just took one for the team and learned something from it; now you can share your failure and knowledge with others so that they can grow from it like you did. Failure is awesome. It builds character and wisdom. It’s a challenge and it comes with lessons and stories. It is far from boring and it fuels fire and births bravery… if you allow it. Perspective is everything. Many successful people would not be where they are today without the failures that happened throughout their journey.

Step One – Identify the Problem

Observe the full picture. What is the root of the issue? What is the cause? Are there other factors involved? Look beyond the obvious.

 Example: I hate my job and it makes me miserable.

Step Two – Gather Information

Decisions influenced by opinions and emotions may result in poor outcomes. What are the possible solutions and outcomes? What are the facts? What do you feel? What do you want? What or who would be a reliable source of information in reviewing options? What could be the consequences or risks? Ask yourself some questions. Write it down if you need to.

Example: Why do I hate my job? Is it the environment, coworkers, boss, career field or the hours? What is causing me to be unhappy at my place of work?

Step Three – Create Alternatives

We are finding solutions to our problem, not problems with our solutions. Create a list of options, both positive and negative.

Example: Ask for a raise. Go back to college. Update your resume and actively search your job field for opportunities. Find out if you can move to a different position; perhaps you don’t feel challenged or fulfilled in your current position. Do some soul-searching: are you depressed and your job is affected by your mood instead of the other way around? Try changing up your environment by promoting weekly group challenges to boost morale, or doing squats before lunch while answering phone calls, or getting to know coworkers better by planning a night out.

Step Four _ Choose an Alternative and Take Action

This is an important step. What is the point of steps 1-3 if we aren’t going to actually get our hands dirty and make a real effort to resolve this issue? If some of your alternatives are extreme or risky, try the other options first if you want to be on the side of caution. Multi-tasking solutions is also a possibility since some alternatives may take more time than others. Some alternatives may be a quick fix while you work on another alternative that may be more of a long-term solution.

Example: “I really want to go back to college and change careers but it would be a huge process, expensive, a lot of work and a big challenge. I am going to try to make friends with my coworkers and build those relationships and then ask my boss for new responsibilities and a raise.” This is a great start, but keep in mind those were problems for the first solution. Going back to college may be a big challenge but it could be worth it and it could be the best solution. Don’t create problems to scare off a possible solution. However, working with the other alternatives first is a great idea while you investigate the other options.

Step Five – Evaluate and Revise as Needed

Now it is time to review your results. What has been effective or ineffective? At this point, you can adjust your alternatives or fine-tune them. Revise your plan until you sort out the best solution.

Example: You decided you are just not passionate about your job and your boss can’t afford to promote you. You decide to go back to school but this will be a process, so you enroll in online classes. To make the long-term process more enjoyable, you build relationships with your coworkers and convinced your boss to allow casual Friday pizza day to boost morale. You also started listening to podcasts while you work and got a cat to help improve your mood when you go home.

 

*Hopefully this outline has helped or inspired you to work through stressful situations or problematic times in your life. If you still find that you can’t manage stress, look into getting professional help like seeing a therapist. There may also be local resources in your area to help get through certain issues. The National Suicide Prevention Lifeline is 1-800-273-8255. 

Healthy Food

Chickpea Bruschetta

Chickpea bruschetta

Rinse then cut tomatoes in halves and put in a large mixing bowl. Strain and rinse chickpeas and add to bowl. Mince garlic and shallot and add with cheese to the mixture. Add chopped basil, lemon pepper, and toss in red wine vinaigrette.

Serve with a baguette, chips, pita or choice of crackers. Also great over a bed of arugula.

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

I am not convinced

“I’m not convinced.”

Those were the words out of my decade-long relationship with my trusted electrophysiologist. I saw her on and off for 10 years during the moments I had insurance. I had 4 cardiac ablations for supraventricular tachycardia (SVT) from a congenital heart disorder called Wolff-Parkinson-White Syndrome, which is an extra electrical conduction pathway between chambers that cause arrhythmias. My heart rates would go up to 300s and drop down to the 30s. After four cardiac ablations and still having arrhythmias and fast heart rates, I could not take meds to slow down my heart since my rate would drop low too. I spent years in that position… in limbo without treatment and a chaotic heart.

My valves began to deteriorate as well, causing even more issues. I had open heart surgery for an aortic valve repair in 2011 and will need a replacement in the future, requiring open heart surgery again.

My trusted doctor, told me that it sounded like I was dealing with something that was too rare and not likely possible. She wasn’t convinced I could have another rare disorder. She denied me treatment. I was afraid to sleep at night, afraid that I wouldn’t wake up. Did you know you can pass out in your sleep? I finally collected my most recent 50 page heart event monitor report from the VP of the device company (my doctor would not give me the reports) and took it to another doctor. He ordered a Tilt Table Test and induced an episode and found that I had a severe cardioinhibitory response and confirmed that I needed a pacemaker, wondering why it took so long.

Two weeks later, my life changed. My heart rate doesn’t pause, stop or plummet and I can take meds to keep my heart rate from going too high. The pacemaker even kicks in to reduce arrhythmias.

The puzzle pieces all came together after seeing specialists and understanding why I was having a dysfunctional nervous system and irregular heart, chronic pain, chronic fatigue and an array of health issues. Genetic testing, research and being my own advocate helped more than anything. It took my entire life to get answers. I learned that I have Ehlers-Danlos Syndrome, a connective tissue disorder that causes many of my health issues on top of WPW Syndrome. Having WPW made is harder to see that something more could be going on because everyone was focused on that.

I never want anyone else to ever have to go through what I have gone through. I never want anyone else to be medically neglected, dismissed or too rare for their doctor to be convinced. There is an entire world of people suffering in the dark. My mission is to change that. I raise awareness for those people that feel alone, lost and ignored while they fear for their lives, praying to wake up the next morning.

Thank you for listening!

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!

mental health

Sage

Oftentimes when others walk away or inflict hurt upon us, we are left questioning ourselves. We dissect every memory, moment and action to search for answers of what went wrong. Our self worth begins to crumble.

Sometimes, what happens is that the toxic person who hurt you is bringing you down in order to justify their actions. People don’t like to own up to their mistakes or take responsibility for their actions, and they get away with it by adding insult to injury.

While you are feeling blindsided, broken or down, they get you to believe that it is all your fault. Just remember that you are going to get through this and you will look back and appreciate your growth and outcome, as hard as it may be to see now.