Health

Tubal Ligation Complications – Filshie Clips

I had a tubal ligation in 2005 after having twin boys and a beautiful little girl. Having heart issues and pregnancy complications, it was the best choice for me. I am allergic to latex and birth control made me incredibly ill.

I was under the impression that they cut and tied or burned the fallopian tubes. I was never aware of anything being implanted or a device. Fast forward to Early 2017, when my heath issues are all over the place. I was having stomach issues, losing weight and dealing with an array of deficiencies and heart issues. I had many ER visits due to severe episodes of Postural Orthostatic Tachycardia Syndrome and had an xray done at the ER for stomach pain. As usual, I was sent home with no answers and told it was just anxiety.

Being the advocate that I am, I always head to the medical records department soon after a hospital trip. I gathered my medical records, labs and reports and sat down in my car and read through them. You find out much more about your health this way and it’s much faster than waiting for weeks or months for results or follow ups. I found over the years that medical professionals leave out a lot of important information.

One important piece of information that was left out, but mentioned on my radiology report, is that my right tubal clip was dislodged and located on the right side of my pericolic gutter. I was shocked. No one told me. I would still not know today had I not checked my report. I am sure that most of my health issues were not related as I have a long history or heart issues and Ehlers Danlos Syndrome but I’m sure it couldn’t have been healthy to have a metal clip lodging itself into multiple organs.

I made an appointment with my new gynecologist, not the one who installed the Filshie Clips. The doctor who put my clips in was the high risk obstetrician who delivered my daughter. The new doctor took on the challenge to located the clip (at one point was lodged in my bladder) and remove it and the other clip as well.

I am sharing this story because I urge women to ask questions, research and educate themselves. This story is another scary example of why it is so important to advocate for ourselves.

Body and Beauty, Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – War Paint

I always try to smooth my hair and conceal my tired eyes. I always dust on a peachy pink blush and a fun lip color, regardless of how I feel. This is the mask of an invisible illness warrior. Occasionally, there are days that I struggle to even lift a limb to put on my war paint. On those days when I bare a naked face and join society, I get told over and over and over again, “You look tired.”

When someone looks exhausted or drained, instead try asking if they need anything or offer help, a compliment or anything positive. I wear makeup to hide when my face goes pale while my blood pressure drops and my body starts going numb, ringing in my ears or the sound of my pulse takes over while my vision starts to sparkle or fade. I wear lipstick to hide the loss of color while I brace myself against the wall or casually sit down and continue to smile and listen to your day.

Every day is a struggle, whether it is big or small. On the really bad days, it is a lonely world and it feels like no one understand. When you try to reach out, no one listens because they think you are young and healthy and perfectly fine. It feels dismissive and disheartening, quiet and empty as you hope for tomorrow to be a better day.

Health

The Bendy Life – Ehlers Danlos Syndrome

Ehlers-Danlos Syndrome is a group of inherited disorders that weaken connective tissues.  Connective tissues are proteins that support skin, bones, blood vessels, and other organs.

My childhood consisted of chronic stomach issues with pain and constipation, never ending growing pains, Supraventricular Tachycardia, easy bruising, joint hyper mobility, sleep disorders, chronic fatigue, abdominal wall hernia, autonomic dysfunction such as temperature and blood pressure regulation, headaches, frequent urination, mouth ulcers, heat intolerance, just to name a few!

I could pop my hips out of place like it was nothing. I could twist my arms over 360 degrees and freak people out. Once, I bent my arm around in my physical education class and showed the teacher, asking if I could see the nurse. I often tried getting out of gym class due to my heart rate in the 250 bpm range from Supraventricular Tachycardia (SVT) that did not get discovered or diagnosed until I was 15. So, I am in 3rd grade and when the teacher sees my arm, she was horrified! Guilt set in and I instantly said I was kidding and ran off.

I was also an expert and hide and seek. I could bend and fold into any tiny space and would always hear everyone give up on finding me because I would fit into such unexpected places.

When I got to my teens, you can also add that I had sleep paralysis, migraines with aura, vertigo, dizziness, POTS, adrenal surges and crashes, sleeping in school, ADD, brain fog, endometriosis, Inappropriate Sinus Tachycardia, depression, IBS, MCAS, and anxiety.

However, I was a healthy young girl. Everything was missed and overlooked because this was all normal to me and having such a rare disease is always too far outside of the box for most doctors.

It was not until I had 4 cardiac ablations, 1 endometrial ablation, 1 open heart surgery for aortic valve repair and a pacemaker for neurocardiogenic syncope and sick sinus syndrome, hundreds of ER visits and dozens of hospitalizations later that I got diagnosed with Ehlers-Danlos Syndrome. After desperation and never any answers, I was the one who asked the doctors to diagnose me after I stumbled upon this rare diagnosis from research and from my Mother in law suggesting that I look into it. My entire life I was told that I was young and healthy and a hypochondriac. When I saw the Beighton Score and had 8/9 I knew this was me. This all finally made sense. Then, I presented it to my doctors. 33 years.

My goal for this blog is to share my story and daily life hacks and struggles. I want to support others and inspire people to advocate for themselves. If I did not research and push for tests and get copies of my medical records I would still be lost because no doctor took the time to dig and most won’t.

When they hear hooves, they assume it’s a horse but rarely it is a zebra. We are the zebras and we need to raise awareness for EDS so that we are not dismissed anymore. We are in an unfortunate gray area in the medical field where we have no specialist to go to, just multiple doctors for each of our many  ailments and most doctors have to google it.

I plan to have many more blog posts on specific health issues that come with EDS and to share as much information as I can.