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, News

Lower Health Care Costs Act

Committees play out the regular duties of congressional lawmaking, which have not changed much in more than a century. Committees decide which bills move forward to consideration by the House or Senate as a whole. Senate committees vary from banking, armed services, agriculture, natural resources and so on. The Senate divides work between standing committees into subcommittees. Senate committees monitor on-going government operations.

Health, Education, Labor, and Pensions is a committee under the U.S. Senate with a total of 23 members. The Ranking Minority Member is Patty Murray and Lamar Alexander as the Majority Chairman. There are three subcommittees: Children and Families, Employment and Workplace Safety, and Primary Health and Retirement Security. June 18th was the recent full committee hearing on Lower Health Care Costs Act. Senator Alexander begins the meeting with a startling statistic that “up to half of the 3.5 trillion, the U.S. spent on healthcare in 2017 was unnecessary.” This tapeworm on the American economy is the biggest financial problem facing American families. How do we reduce what the people pay out of their own pockets from primary care to prescription drugs?  Some suggestions are to end surprise billing, more transparency, require patients to be given more information on the cost and quality of their care, and to increase prescription drug competition.

Senator Murray and Alexander are working on bipartisan bills along with other committee members for this  Lower Health Care Costs Act of 2019. The debate about lower cost health care is always an ongoing debate. This 2019 act will provide Americans better options in healthcare. This topic is very important for our country, as many people are unable to afford healthcare. There are people who have no choice but to ration life-saving medications, such as insulin, due to irrational price markups. Issues like this are killing people.

“A functional market does not regularly drive families into bankruptcy.” – President and CEO of Nonprofit Pacific Business Group on Health, Ms. Elizabeth Mitchell

Our healthcare has become a luxury, enabling anti-competitive behavior with consolidated markets in an industry that has a patient’s interests last. This bill can help mend a broken market, where a majority of citizens rely on crowd-funding to treat illnesses.

“Half of the public cannot see a doctor when they need to because of healthcare cost.” – Mr. Isasi of Families of USA

*Watch the June 18th, 2019 meeting to listen to more information about this Lowered Healthcare Cost Act

mental health

What Anxiety and Depression Feels Like

Anxiety is not being nervous over a big presentation at work. It’s not the butterflies in your stomach while you stress over what to wear. It’s not the feeling of having a hard time because you have too much on your plate.

Anxiety is a wave that towers over you, consuming your entire body. You tremble and shiver, your throat closes up and your palms sweat. Your heart races like a hummingbird. Many times it can be for no reason at all. It is out of your control. Your body is temporarily not yours. A state of panic sets in and you feel like you might die. Anxiety is neurotransmitters out of balance. It is the feeling of melting into quicksand. It’s feeling as if something terrible is about to happen. It feels as if you are about to implode.

Depression is not feeling bummed because you had a rough day. It’s not feeling sad because things didn’t go your right today. Depression is not being sad about that mean comment someone made towards you. It is not something that you can just suck up and get over. It is not cured by a simple attitude adjustment. It is a thick heavy blanket that drowns you. Sometimes it is devastatingly painful. Sometimes it is pure numbness, and other times it is the feeling of doom buried deep within you. It is like you are grieving the biggest loss you have ever felt. Even when the sun is shining and the sky is blue, this feeling can sink you. Oftentimes there is not even a reason. It’s like you’re missing a limb. Something is missing but you can’t place what it is.

Anxiety and depression does not make you weak, nor does it mean that you are weak. Mental health disorders are greatly misunderstood by a majority of society. The stigma must end and something needs to change. Generations are losing many to this epidemic. Addiction grows from mental health disorders and the need to self-medicate to escape from suffering.

My Amazon Recommendations

Little ways to make a small difference:

  • Listen when someone needs to talk
  • Don’t tell them it will “get better” or to “suck it up,” as these are dismissive comments that are not helpful
  • If you don’t understand, then try to empathize
  • Toxic positivity can be harmful. Pretending to be okay is not productive or healing.

National Suicide Prevention Lifeline

Call 1-800-273-8255

Available 24 hours everyday

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….

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.

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.