Health

Tinnitus

Tinnitus is a symptom of an underlying condition in which you hear ringing in the ears.

Silence for me is not silence at all. Silence means more noise. The ringing, it’s like a symphony of tones all at once. The infinite pitches echo forever. Everything is louder when it’s quite. Sometimes the ringing is so loud that it feels like my skull is vibrating. I also hear the blood rushing through my veins. Whoosh. Whoosh. My brain feels as though it throbs with each heartbeat at times. The sounds keep me up at night. High tones, low tones… all at once, in the darkness.

Once I begin to drift to sleep, I am jolted by a skipped heart beat or wake up to the fact that I am clenching my jaw (unintentionally from chronic pain), or because I will soon have to get up to pee for the 10th time.

The clock reminds me how much I am failing at getting a good nights rest. Buzzing, whooshing, ringing, thumping: the chaos that no one else can hear but me.

Health, Unveiling Invisible Illnesses

Mayo Clinic Update

We are done for the day and just had the evaluation with the cardiologist. In a nutshell: it takes a village. My aortic valve is slightly worse but my heart isn’t in bad shape to need surgery YET so that is great news, for now. However, I did have an elevated NT-Pro BNP which is indicative of heart failure but ever so mild and more to be used as a baseline.

I will be back September 5th for more tests. I will finally get my cortisol and metanephrines tested. I will have a CT angio and a 7 day heart monitor. The role for this doctor will mainly be to monitor my heart valve. We are ruling out any other structural abnormalities and then this information will be very helpful to the new neurologist that I will be seeing out of state in Arizona, unless Nashville opens up (first choice). The answers I am mostly looking for will be there, to better understand and treat my dysfunctional nervous system. The full genetic sequencing is another piece of the puzzle. There are a lot of pieces.

The valve is one issue but my nervous system is what causes the other heart problems, as well and many other issues. This is an ongoing process. It’s is an up an down roller coaster. At times, I am excited to get answers and the Cinderella hopefulness to find a way to magically be better. Oftentimes I find the sinking feeling of reality and logic settling in my stomach that there is no cure, just management. It’s impossible to accept and why I still try to search for more answers.

My health is like a domino effect: one issue causes another, then another… There is such a huge list of issues connected to connective tissue (disorders). This also makes it difficult to understand and diagnose, because it’s essentially a giant cluster fuck.

I will always continue searching because science advances, awareness spreads education, and advocacy feeds it all. I will continue to fight for myself but also for the future of others that will stand in my shoes one day. I hope the darkness in my life fuels the light that other seek.

Thank you for listening and for your support. Feel free to subscribe or to reach out if you ever need any help. It is my passion to lead other patients in the direction they need.I know exactly what it feels like to be lost, medically neglected, and dismissed.

Helpful Links:

http://www.dysautonomiainternational.org

https://www.ehlers-danlos.com

https://www.healthline.com/health/mast-cell-activation-syndrome

The Invisible Diaries

https://vimeo.com/292473119

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

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!

Health, mental health, Unveiling Invisible Illnesses

Rare Disease Day

It is Rare Disease Day so obviously I am jumping on this moment to raise awareness. I have Ehlers-Danlos Syndrome and a rare type, called cardiac-valvular EDS or cvEDS.

Hypermobility is very common with EDS. There are many, many other health issues that fall under the umbrella due to this collagen defect. Imagine your joints are like rubber, frequently popping out of place from even just a hug or rolling over in bed. Sometimes these joints stay out of place or wear down. It is a painful disease to many.

This does not only affect joints but can also affect your organs.

We are all different and we call ourselves Zebras because in the medical field, doctors and nurses are trained that when they hear hooves to look for horses not zebras. This mentality has caused me to go undiagnosed and medically neglected for my entire life, up until I had genetic testing last year. Despite my heart issues and frequent ER visits, being young and seemingly healthy has had me labeled as drug seeking or having anxiety attacks.

The reason why is because EDS and dysautonomia (dysfunction of the autonomic nervous system) does not show up on routine blood work. I have never done drugs, besides cannabis, and even after open heart surgery and a broken sternum I did not even finish my pain meds prescription. I have been treated as if I were an IV drug user, because in my area that is the only reason someone of my age would have this extent of damage to their heart. I am so incredibly thankful to now be taken seriously with a diagnosis, but it is bittersweet because this syndrome is progressive and for me, my heart is always at risk. In my recent echo, I have developed a dilated aortic root. This is beyond scary to me because EDS, especially cvEDS comes with aneurisms. Dealing with this type of diagnosis as well as chronic pain and illness is mentally exhausting.

I am passionate about awareness is because it took so fucking long to be heard. I suffered for so long not taking proper care of myself and not knowing the correct treatments. I have been called a hypochondriac by exes and have hidden behind a mask for years. I want others to know they are not alone and I want medical professionals to see us.

Health, mental health, Unveiling Invisible Illnesses

Waking Up in Pain

Mornings are hard. When you think of Sundays, you think of sleeping in and waking up to the sun finding it’s way to to you. You think of sitting up, a nice stretch and a moment to admire the open window sharing hints of a beautiful day.

The reality is that you wake up from pain. And you have woken up several times already but you hurt too much to go back to sleep and the sun is up now, so you may as well get out of bed. Lying in bed hurts. It isn’t this relaxing thing where you can leisurely sprawl out in bed and feel like you are on a cloud, melting into your mattress. No, you have to move because one position makes your tailbone go numb and another hurts your collarbone and lying on your stomach makes your back feel broken.

So, now you get up and everything pops back into place. Almost everything. Your left hand and lips are tingling and numb but it only last a few minutes. You walk to the bathroom, holding on to everything you pass for stability so that you don’t fall. Even when you sit down, reaching to wipe is excruciating and demoralizing. It breaks you just glimpsing into the future, wondering if are going to need help wiping your own ass one day. Then, as much as you want to crawl back into bed and melt into your significant other, you quietly walk out of the room so you can find something to do and walk off the pain of sleeping.

Your head is killing you and you are nauseous as if you are hungover. As you walk to the kitchen, everything fades away and you can’t see. Your body starts to feel fuzzy and go numb, just like before you pass out. You don’t typically fully pass out so you know you can just keep walking through it as long as you hold on the way there. You are a pro and have smiled and held conversations while on the brink of passing out but you know it passes and this is your norm.

When pain levels are high, your morale is low. Your dreams and ambition slide over to the back burner. Sometimes they even get put away into Tupperware to decay in the back, hidden behind the fruit. Sometimes the sunshine creeping in through the window looks so far away. But you just get through this. You hold on to the idea of your next good day, whenever that may be. You find hope in new remedies and whatever ways you can try to have control over your health. You find hope in the people who support you and your loved ones.

*On the pain scale of 1-10, I have never been under a five. My one is a five. I am not wanting sympathy but what I am wanting is to be honest about how I feel instead of hiding with an autopilot response of “I’m fine.” I want to raise awareness for people like me so they don’t feel alone, and for people without chronic pain so that they can understand their loved one or friend. We live in a world of sucking it up and smiling through the pain. We are suppressed and depressed with a bottled soul. It isn’t right. Be real and let others be real so they they aren’t lost and alone.

mental health, Unveiling Invisible Illnesses

Are You Still In There?

When bad days turn into weeks. When your strengths are suffocating. When your dreams drift too far. When nothing seems fair. When tears turn into fears. When you get lost. When you feel defeated. When you stop feeling. You aren’t alone.

Health, Unveiling Invisible Illnesses

The Grey Area of the Medical Field

The grey area is a state that doesn’t live on one side or the other. It is nomadic and intermediate; the blurry line.

The grey area is where many undiagnosed, dismissed and neglected health issues live. For some, they got tossed back and forth between doctors and never really helped by any, or are just getting by with the small crumbs of progress over a span of time.

The grey area is also the wait. It’s waiting for the inevitable, irreversible and impending progression of a particular diagnosis. It’s knowing a risks but having no control or peace of mind. Sometimes you float in between acceptance and anger.

The grey area is where the people who don’t fit in the one-size-fits-all category call home.

Many of us only know the grey area, constantly hoping someone will understand us or send out a rescue team to bring us in.

Awareness is for us, in the grey area, looking to fit in somewhere, to make sense, to have answers, to not be neglected or alone.

Share your fire until it lights up the sky, defining a new meaning and growing into a new path where those who were once lost can be found.