Topic: Grieving Your Past Life with Chronic Illness
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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.
Little ways to make a small difference:
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.
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.
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….
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 firstname.lastname@example.org and introduce yourself.
Stay tuned and follow us on social media for updates on our official launch!
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.
Published in the April 2019 The Beachside Resident
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
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.
Gantt, E. E., & Slife, B. (2018). Taking sides: Clashing views on psychological issues, 20th edition. New York, NY: McGraw-Hill Education.
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.