Health, Unveiling Invisible Illnesses

Sweet Dreams with an Invisible Illness

When your bed is your sanctuary, a safe place but some moments steal that from you.

After a long day, collapsing into bed is pure bliss. Your head rests on the pillow and the soft comforter melts over you. As your eyes become heavy, suddenly your heart flutters with each breath. Your chest gets tight, as if someone is crushing you or you swam to the bottom of the deep-end pool. Your left hand and mouth feel like needles and pins while your chest begins to ache. The pain in your left arm makes it impossible not to worry.

You sit up and take slow deep breaths, taking your blood pressure and discovering that it is high. Some moments your blood feels cold as it runs through your body, so you turn on your bedside heater and grab your robe; this isn’t the first time you have felt this way so you know what to do by now. After a few starling palpitations you decide it’s time for emergency medication. You are still trying to prevent going to the ER, where they will simply question your mental health and ask, “are you having an anxiety attack?”

“You’re too young for…”

“No, that’s not common for your age…”

———-

As I sit up, I can’t help but wish my body didn’t betray me so often.

Let me rest.

Let this pass.

Why?

My muscles twitch and spasm throughout and inside my body, like a symphony of fireworks. The ringing [in my ears] is so loud that even as I distract myself with the TV, it still rings louder. Occasionally the chest pain strengthens and waves of vasospasms in my chest put the fear in me of what could happen next. I try lying down again until I shoot up after another intense heart rhythm.

I’m so tired.

Please.

As the meds kick in, I wait to lie back down in fear that another episode will come. One by one, I turn off my heater, remove my robe as my blood circulates better, take a deep breath to see if the tightness has released, slowly inching back into my pillow, and then I drift into sleep only to hope that I wake up to start my day tomorrow.


*From 2017-2019 I went to the ER 54 times. I still continue to end up in an ER once every month. I decided to document/blog (after) an episode that sometimes sends me to the ER; fortunately I was able to manage through it tonight and avoided an ER trip. This is another reason I am grateful that Mayo Clinic found the myocardial bridge, which often causes coronary artery vasospasms at night.

Thanks for listening and learning with me to spread awareness and hope for others that may one day be in my shoes. Never take your health for granted.

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

mental health, Podcast

How To Work Through a Problem – Listen Now!

Podcast Link

Hello! This topic is important to me because so many of us go through life struggling and stressed, never learning the proper tools to work through an issue.

The original post How To Work Through a Problem has inspired the topic for episode 5 on my podcast, The Misti Blu Days of Our Lives.

Please be sure to subscribe and leave 5 stars so that others can stumble upon my podcast and blog! It is available on Spotify, iTunes, and iHeartRadio, or you can listen on the RSS feed link.

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!