Health, Unveiling Invisible Illnesses

Invisible Illnesses Unveiled- Cervical Cancer and Endometriosis

This photo was taken 2 weeks after I had a conization, a cone-shaped piece of tissue, removed from the cervix. Before that procedure, I had 5 biopsies on my cervix showing precancerous dysplasia CIN3.

A week before this photo was taken, I was told I had cervical cancer. I had micro invasions in the margins where my cone biopsy was taken. Sometimes this procedure removes the bad cells and you are done. However, occasionally the margins are still positive and further treatment is required.

When I walked into the office, having fevers and recovering from the procedure, I came in to follow up and get answers from the pathology. I sat down in her office, distracted by the vibrant decor… black, white and silver glam office, reminding me of a salon or just a really girly office. My nervous mind wandering. What should I do for the rest of the day? Where should I get lunch?

“You have cancer. The margins are positive and this all happened so fast, meaning that it is super aggressive. The area of the micro invasions are up closer to your uterus and blood vessels so I am also worried about it spreading. You will need to see an oncologist for a hysterectomy and possibly further treatment.”

I steered my gaze from the sparking decor and looked her in the eyes, eyes of concern and dread for giving bad news to me every time I see her. My thoughts are whirling as I think about how this can’t possibly be real. My vision blurs as tears welt up in disbelief and fear. I have three kids and an amazing husband that I adore. I have a compromised heart that can’t handle much and still struggle to get my health under control… How can I go through this?

The appointment felt like a break up as I got passed along to a male doctor I have never met, an hour away after finally trusting this doctor and an appointment a couple weeks later, which felt like eternity.

Just before this photo was taken, my husband and I got bikes to ride on the beach. I was feeling great and it was beautiful. I still was processing the news but made the decision to remain calm and patient. We were on a trip in Miami South Beach. After riding the bikes for only a few minutes, I got dizzy and clammy. “Sorry to cut this short, babe, but I don’t feel well and I want to go back to the room.”

My sweet, understanding husband got the bikes returned and we went to our room on the 10th floor with a gorgeous view. A few hours later, I started hemorrhaging. I ended up in the Miami ER for 7 hours, finally being discharged so that we could return home and see my doctor.

Now, as I write this, I am almost two weeks post op from my hysterectomy and my pathology was cleared for no further treatment and I am cancer free. Though I did have to go back to the hospital for two broad spectrum IV antibiotics for two days, I am doing well.

I would not wish this roller coaster on anyone but I am so grateful it wasn’t worse. It could have been worse. I could be still fighting. Before I came in for my one week hysterectomy post op appointment, I said to myself, “If there is more, I am done. I will live my life happy and will not do any further treatment or put my heart through anything more.” I was so lucky. I am so lucky and grateful.

I will say, as someone who suffered from severe endometriosis most of my life, close to two decades, I wish I had a hysterectomy sooner. I put it off for so long, worried about everyone’s opinions and fears. I am excited to start this new chapter of my life of no suffering. I want to buy white pants to celebrate! Two weeks of every month will be mine again, not lost in bed with migraines, severe pain, chest tightness, fevers, fatigue, nausea, IBS and depression.

If you have severe endometriosis, a hysterectomy is nothing but just one last period cramp. You’ll do fine!

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

Everything Is Going To Be Fine

Talking to certain friends can be very difficult or even stressful. I have learned that not all friends are cut out for every conversation. Some friends are fun and want to talk about who they have a crush on, silly poop jokes or their current laundry situation. That is always great to have but sometimes it isn’t enough.

I often have stressful news about my health and I used to get resentful and angry that when I would talk to my close friends, they would immediately change the topic and talk about something mundane or random, having nothing to do with what I just said. It made me feel completely dismissed. The following day, sometimes I would think that maybe they would check on me and see how I was doing, but they never did. It was like I never said anything.

Recently, I had a health scare and they all told me, “Everything is going to be fine.” I am a pretty positive person and I appreciate it when I have a positive conversation, but sometimes I just want to talk about real life. Sometimes, everything is not fine. Maybe it will be fine again, and damn… we are going to try, but life can be scary. I don’t think it is always okay to sugar coat, dismiss and repaint a picture. Let’s talk what is real, make a plan, support each other and bitch about the battle. Sometimes people just need to vent. The worst part is that the scare turned into reality and everything was not fine. Their response to that was pretty much the same. “It will be okay!”

I decided to not be upset with my close friends anymore, despite their inattentiveness. I realized they were not the friends I go to when shit hits the fan or if I need them for anything serious. I think I also realized that I am usually the one they go to when they need someone or maybe they just don’t want to believe there is anything wrong with me. That is what I like to tell myself anyway. What I did realize is that I did have some friends who also had health battles and that I could talk to them. I also see a therapist so she is more cut out for the job than those other friends and it helps me to depend on them less.

Joining support groups online or on Facebook has also been beneficial for learning more about your health issues and finding people who understand.

It is important to know that when you are a warrior and constantly battling your health, not everyone has been to war. Not everyone is a soldier and not everyone understands. Find your army, keep your chin up and don’t let those in the sidelines upset you for not knowing how to fight.

Health

Ehlers Danlos Syndrome Awareness Month – You Don’t Look Sick

May is apparently everything awareness month, so today I chose to share a little bit about Ehlers Danlos Syndrome. In the medical field, doctors are trained that when they hear hooves that it is always a horse and never a zebra. The zebras in the world are standing up and wanting answers. We have been dismissed all of our lives. It is so important to me to educate everyone I meet in the medical field so that they can keep an open mind and empathy for those who suffer without answers. 🦓

Photo by Nicole Borges Photography

Health, Unveiling Invisible Illnesses

How To Be There For Someone With A Chronic Illness

Imagine you have two people who are not on the same page, let alone the same book. One struggles with chronic illness and the other is averagely healthy and maybe even deals with a common ailment here and there, but how can they relate when it comes to health? It may not come easy to some when they have never had their health jeopardized. It is important to build a bridge to have a connection with your family or friend.

Invisible Illnesses

Perhaps your friend or loved one has an invisible illness. This means that they look healthy on the outside but on the inside they struggle with an illness like diabetes, lupus, PTSD, POTS, Thyroid diseases, Cardiac and Neurological diseases, to name a few.

We all have our own battles.

It can be tough to look at someone who looks fully capable of living life the way you do but we are all different. Understand that just because you may be healthy and can juggle so many tasks, does not mean it comes easy for others.

It is important to recognize that with all things, there is a spectrum. With chronic illnesses, that spectrum can vary day to day. One morning, we may have so much energy that we can clean the house and go out to get lunch but the next morning we may be bedridden.

Personally, putting on makeup every day is my way of putting on war paint. I hide my dark circles from waking up every hour. I conceal the redness in my face or sometimes add blush to my pale skin. When I look well, I don’t get asked if I am sick or told I look tired. I feel normal and ready to take on the day.

Just because you friend or loved one looks put together and seems young and healthy, doesn’t mean she wasn’t up at 4am with severe back spasms and again at 5am feeling dehydrated and again at 6am in more pain and a numb arm until it is finally time to get up for the day. She probably got dizzy a few different times while her blood pressure dropped, causing nausea and tachycardia. Be grateful she answered the phone or showed up for lunch and she we be grateful for you.

The Spoon Theory

The Spoon Theory is a metaphor to explain the limited energy that someone with an invisible or chronic illness struggles with. Say you get 12 spoons each day and each task costs a spoon or two. Sometimes a shower can cost 2 spoons on a rough day. Going to work can cost a lot of spoons as well. Cleaning the kitchen? That will be 3 spoons! Sometimes if you push yourself too hard, it costs spoons from the next day which will leave you in bed with limited spoons.

We call people “Spoonies” who fit in to the Spoon Theory.

How to be there for a Spoonie:

  • Understanding – The fact that you have read this so far is already a huge deal for your Spoonie. Trying to understand what life is like for your friend or loved one shows a lot of compassion and empathy. This is your biggest step and the most important. For some, we are constantly judged, assumed we are lazy, told it is in our head, called a hypochondriac or just straight up dismissed. Certain medical conditions sometimes take up to a decade or longer to get diagnosed. Often times there are several misdiagnosis’s and even people get left in a grey area where no one knows what to do. We feel alone and lost.
  • Keep Your Ideals To Yourself – We appreciate your concerns, absolutely. I can vouch for myself that I have done plenty of research, am fully aware of my body and what is normal for me, have a strict diet with optimal nutrition and supplements, non drinker, non smoker and always staying positive as well as seeing a therapist. My health is a full time job. You can’t even pronounce what illnesses I have so please don’t try to cure me. Of course, we appreciate advice but keep it simple and keep it at that. Do not try to push your ideals on someone or tell them if they exercise more they will feel better or that they can meditate to a cure. All we want is a shoulder to cry on, a listening ear, positive vibes and understanding.
  • If You Are Sick, Stay Away! – Seriously, some of us have compromised immune systems and if you have a cold or flu and bring your germs to anyone, even a healthy person, it is just simply rude. If you bring your germs to someone who is already ill, it is cruel. We don’t fight infections and other illnesses very well and most of the time it makes our other issues worse and for some, it could mean a trip to the hospital.
  • Social Gatherings – There is a good chance we might not make it to your event or night out. I can assure you that we wish we were there but more often than not, our health makes us flakey friends. Please don’t stop inviting us! We will always try, even if the chances are slim. Also, please don’t get upset with us if we don’t make it. We would rather be out having fun with you than stuck in bed.
  • Know That We Are Fighting A Battle – If we seem a little off, let us be a little off. There are countless times when I was hanging out with someone while my vision blurred and I start seeing stars, getting light headed and heart palpitations but I push through because this is my normal life. Something that has always bothered me was when strangers, coworkers or peers say “Smile! It can’t be that bad!” Well, maybe I am struggling with an ocular migraine that day, low blood pressure or didn’t sleep well, so if I have a case of resting bitch face then let it be. I know it could always be worse but I am here, smile or not!
  • My Illness Does Not Define Me – I am a strong warrior. I love art, music, travel, culture, anything vintage, food, nature, giving back and being creative. I can be sensitive but I persevere and I keep my chin up. I have not given up and I won’t. I have bad days but I climb above it and stay positive, even it it is a full time job. I am not my illness. However, it is part of my life, whether big or small. It may affect me but it is not who I am.

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.

Health

Ehlers Danlos Syndrome and Unusual Sounds

Tensor tympani is a muscle within the ear that reacts to sudden loud sounds.  It tenses to reduce the volume of sound when you chew food and tone down the sound of your voice when you speak. When it works properly, you aren’t aware of it, however, when you have  Tonic Tensor Tympani Syndrome  you can heart thunder, tapping, hammering or gun shot type sounds.

Symptoms include:

  • Fluttering sensation
  • Muffled hearing
  • Fullness
  • Balance problems
  • Tinnitus
  • Pain, numbness or burning
  • Headache
  • Vertigo

I have never been able to tolerate yelling. If someone raises their voice near me for too long it drives me crazy because I hear a hammering sound after each word. Sometimes large crowds or a loud group of people can be exhausting and I feel overstimulated. I sometimes find myself recovering from the day in a silent room.

Now that you have a better understanding about the clicking sounds in your head, you can follow up with an ENT specialist or talk to your doctor. I take CBD oil to stay relaxed and I am looking into acupuncture soon. I am just mostly relieved to know that I am not crazy and that my entire life is starting to make sense. I would love to hear your story!