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.

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!

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.

mental health

30 Day Mental Health Challenge

Check off each day as you go. If you miss a day, go back to it and complete at the end.

Feel free to share any of your challenges and activities on Instagram with #30DayBlu

  • Day 1: Write a list of your goals for the month
  • Day 2: Put your headphones on and go on a 15 minute walk.
  • Day 3: Treat yourself! Whether it is a concert, hot bath, massage or ice cream… you deserve it.
  • Day 4: Write a letter to someone who hurt you and then burn it.
  • Day 5: No phone for the evening! Shut off your phone before dinner and don’t touch it till morning.
  • Day 6: Start a new book or continue reading the book that you haven’t finished yet.
  • Day 7: Compliment 3 complete strangers
  • Day 8: Plan a mini adventure for your next day off. Check out a nearby town. Go to a museum or garden, for example.
  • Day 9: Reach out to a person you have been out of touch with; ask them how they’ve been.
  • Day 10: Clean your closet and donate what you don’t use or wear anymore
  • Day 11: Try something new! Go to a yoga class or an art class.
  • Day 12: Look in the mirror and tell yourself 3 great things about yourself
  • Day 13: Cut something toxic out of your life. Examples: a bad habit, toxic relationship, sugar addiction.
  • Day 14: Health day! Smoothies, salads and clean eating. Focus on health and nutrition today.
  • Day 15: Spend 15 minutes stretching and focusing on breathing.
  • Day 16: Do something nice and unexpected for someone.
  • Day 17: Be present. Make eye contact all day, with each conversation you have. Even if it is the cashier at the grocery store. Be aware of your surroundings and listen.
  • Day 16: Get a jar and fill it with all the loose change you find throughout the day. Label it with your choice: vacation, anniversary, Christmas funds, new shoes, massage…
  • Day 17: No social media till noon! Check on your list of goals for the month or catch up on a day you missed.
  • Day 18: Learn something new. Spend 15 minutes reading or researching about an interesting topic.
  • Day 19: Art day! Create something: a drawing, poem, painting, or anything of your choice. Check Pinterest if you are drawing a blank.
  • Day 20: Think of something you have done that you regret or are ashamed of. Forgive yourself. You are human and we make mistakes and grow from them. Think about what you learned. Follow with a self-care activity.
  • Day 21: Send a card or letter to a good friend or family member.
  • Day 22: Clean your nightstand, wash your bedding and plan to go to bed early tonight. No tv or phone! Focus on breathing and visualize the ocean or mountains.
  • Day 23: Forgive someone who never apologized. Think about how you were hurt and let it go. You owe it to yourself, not them.
  • Day 24: Donate some items to the Humane Society, local food pantry or women’s shelter.
  • Day 25: Do something outside of your comfort zone.
  • Day 26: Make that doctors appointment you have been putting off… your annual check up, routine bloodwork or that follow up and never went to.
  • Day 27: Check on your strong friends. Ask them how they are doing, reach out and give them an opportunity to open up. Those who appear put together sometimes have silent battles.
  • Day 28: Clean your vehicle. If you don’t have a vehicle then clean your bathroom or office.
  • Day 29: Photo day! Take photos of throughout the day to show your perspective through your eyes, but in black and white. Get creative.
  • Day 30: Pay it forward
mental health

Are Antipsychotic Medications Safe?

I am a firm believer that everyone should have genetic testing done. Genetic testing will show which medication you do or do not metabolize as well as which medications you may have an abnormal reaction to. This includes blood thinners, seizure medications, pain medications and psychiatric medications.

Pharmocogentics testing for CYP450, CYP2D6, CYP2D19 genotypes will show personalized information on metabolism for antidepressants and antipsychotics. The MTHFR gene mutation is common in up to 40% of the population and can also alter the response to medications and actually can be the culprit of mental illness alone. The CACNA1C gene is responsible for flow of calcium into neurons and is linked to 5 mental health disorders.

Doctors treat mental illness like a one-size-fits-all standard diagnosis and treatment. Mental illness can be a result of many factors, such as a biochemical imbalance (vitamin deficiencies) rather than simply requiring SSRIs (selective serotonin reuptake inhibitor) or blocking certain receptors. You have to ask yourself, “why does this medication’s adverse reactions include reactions that you are trying to treat?”

Some of these medications can increase the risk of getting diabetes, lower sex drive due to hormonal changes, cardiovascular disorders, involuntary muscle movements, seizures and even a drop in white blood cells.

FDA approval of an antipsychotic medication does not mean it is effective. The FDA only sees one or two of the best studies shown for short-term effectiveness. After 1987, doctors were shocked to have to admit that SSRIs could cause fatal reactions and induce psychosis, mania and depression (Gantt 2018). In fact, none of these drugs are allowed to claim that they may prevent suicide.

In Taking Sides: Psychological Issues, it states that at least 90% of the infamous homicidal school shooters were already under the care of a psychiatrist (or psych drug prescriber) and were either taking or withdrawing from one or more psychiatric drug. The other 10% are simply unknown due to their medical files being secured by authorities.

It is safe to say that these medications can do harm and may not be safe for everyone.

References:

Gantt, E. E., & Slife, B. (2018). Taking sides: Clashing views on psychological issues, 20th edition. New York, NY: McGraw-Hill Education.

http://www.mensahmedical.com/what-are-biochemical-imbalances/

https://www.sciencedirect.com/science/article/pii/S0033318206700299

https://www.psychologytoday.com/us/blog/the-integrationist/201409/genetic-mutation-can-affect-mental-physical-health

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

How Can Anyone Heal With Toxic Positivity?

We are programmed to praise positivity and joy while shunning grief and sadness, which isolates those who need help. As children grow after years of being told to behave and smile, they become adults wearing masks. Our bodies suppress anger, pain, sorrow, suffering and negative emotions that we are not allowed to acknowledge. These buried feelings grow with no release as we walk rampant, showing our teeth to the world to presume only happiness exists within us.

Relationships deepen through vulnerability. People need to open up about their fears, not tuck them away to pretend life is perfect. The world sees strength defined as being tough and resistant to anything other than joy. Sensitivity is seen as weakness.

People need to open up about their sorrows, not hide them with a smile that says “I’m fine.” People need to discuss their anger, not bottle it up. People will explode. People will crumble.

How can anyone heal in an environment that doesn’t allow basic human emotion to breathe?

We are all responsible and need to change our way of thinking so that we can make others feel safe to talk and reach out.

Our culture is designed to suppress half of our basic human emotions, leaving us depressed actors.

It is time to face the reality that life is not perfect and human emotions are not linear. Life is hard and pretending that we are all okay is dangerously exhausting.

Stop telling people to suck it up or that they will be fine. Ask how you can help, listen, and pay attention to the subtle details. Check on your strong friends, your happy friends, and your quiet friends.

Take off your masks and let others know it’s okay to not be okay. It is okay to cry, to grieve, to be angry, to feel lost and to feel frustrated.

We are not robots.

We can’t heal by dreaming of rainbows to swallow our pain and trauma. We heal through a process. We prevent crumbling by expressing emotions. We cannot continue to build a stigma that negative emotions equal weakness. It is time to change the rules.

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.