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

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

Unveiling Invisible Illnesses – Endometriosis

Laura Kay Halcom from Rockledge, Florida is 1 of 10 who struggle with endometriosis, a painful disorder in which the tissue that grows on the lining of your uterus spreads to other organs like the fallopian tubes and ovaries. With no way to exit the body like normal menstruation, the tissue becomes trapped and causes pain, scaring, adhesions and fertility problems.

Endometriosis is difficult to diagnose without an invasive procedure, a laparoscopy. Often times it will be misdiagnosed with IBS or deemed psychological. Symptoms can range based on severity but can cause nausea, low grade fevers, heavy bleeding, lower back pain, pelvic pain, painful intercourse, painful bowel movements and fatigue.

Treatment usually starts with birth control hormones to try to regulate your cycle but unfortunately, some women are very sensitive to the hormones and don’t always respond to that treatment. Another option is an endometrial ablation, but it is not always suggested if you plan to have children. A hysterectomy is a final option but there are studies that it still is no cure and it is a rough surgery. If your endometrial tissue grows onto other organs, removing the uterus is not going to help. There are studies that nutrition can play a big role. An anti-inflammatory diet can help minimize symptoms.

Avoiding gluten, red meat, sugar, caffeine and alcohol can help alleviate symptoms and inflammation. Having a well-balanced diet full of nutrients, antioxidants, fatty acids and iron rich foods is important. Turmeric is a natural anti-inflammatory compound that you can take as capsules or sprinkle on your food. Having plenty of rest, staying hydrated and support will be your best friend for this diagnosis.

Meet Laura

What is your invisible illness?

Endometriosis, Depression, Anxiety

When and how were you diagnosed?

Endo: June 2017 by laparoscopic surgery. It took 12 years and dozens of tests for me to be diagnosed. I have had anxiety & depression since I was 16.

What were your struggles and fear after diagnosis?

There is no known cause, and no cure. Now, the treatments of birth control and antidepressants are just making things worse. I also fear infertility.

What advice do you have for anyone going through a new diagnosis?

Be patient with yourself. Keep records of everything. Find your community of people struggling with what you are fighting. Talk about it. Educate yourself so that you can educate others.

What are your goals and dreams in life?

My goal is to finish my business degree. I want to be an educator and an entertainer. I dream of my own business, where I can express myself through art, music, and nature. I dream of adventure in far away places.

Three things you cannot live without: Sunshine, hugs, and my heating pad!

Favorite Quote:

“What would you attempt to do if you knew you could not fail?”

Endo Warrior Shirt

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

Banana Bag Oral Solution – Getting My Life Back


Banana Bag is an oral solution that you mix in water and drink. It is like getting a bag of IV fluids at the hospital, only without the needles and scary bill. If you are like me and can get dehydrated easily, this is going to be your saving grace! 

Summertime is the worst time for me. I absolutely hate it. Seriously, it is the definition of hell. However, I live in Florida so it is hot most of the year. Let’s face it, I have three kids and live between Cocoa Beach and Orlando which makes it is hard to avoid outdoor activities.  

My daughter is on a swim team and I had to sit in the heat for 4 hours during her swim meets and the first one landed me in the hospital. The second one, I tried Banana Bag and I made it through. This year, my mother treated my family to a day at the water park and I also made it through without getting dehydrated and sent to the ER.  I froze a liter of water with the solution and I put some cherry juice and fresh raspberries in it so that it was a frozen chunk of ice that slowly melted throughout the day for a constantly cold drink. It kept me cool, hydrated and prevented the usual health issues. It does have a vitamin taste so I like to add more water and some juice for flavor but I prefer it over hospitals and sugary sports drinks. It is such a relief to be able to spend time with my family without having to end up in the ER to get a bag of fluids. This is a game changer!



I have a rare connective tissue disease called Ehlers-Danlos Syndrome that I just got diagnosed with this year after struggling with health problems my entire life. EDS is a collagen defect which causes joint hyper mobility (such as being double jointed) and a plethora of health issues including Dysautonomia. People with dysautonomia dehydrate faster.


For me, my dysautonomia comes in the form of low blood pressure, temperature control such as easily overheating and easily cold with full blown shivering,  pre-syncope with waves of lightheadedness, vision loss and numbness, painful kidney spasms, tachycardia, POTSNeurocardiogenic Syncope and Sinus Node Dysfunction, (pacemaker since June 2017) to name a few. 

I have cut out preservatives, limited sugar intake and eat an anti-inflammatory and autoimmune diet. I take high does of vitamin C and CBD daily. I do not digest meat well so I cut it out and only eat fish and eggs. I cut out dairy because 90% of it gives me migraines with aura and so does MSG and artificial sweeteners. It has also taken me most of my life to learn what I cannot have. If I accidentally consume any of these things, I can guarantee a 4 hour comatose nap and wake up with a migraine and flashing lights, a racing heart and disorientation. This will last all day and sometimes the following day.

 It is also CRUCIAL for me to get all of my minerals, vitamins and electrolytes because I tend to get deficient in quite a few. Vitamin deficiencies can also cause so many health issues and unfortunately get missed and mistaken for other diseases. Vitamin B deficiency, for example, is very common and can cause tingling sensations in your extremities, depression, fatigue, weakness and irritability. 

The cool thing about this product is that it was made by a pharmacist who also made the IV solutions for ERs. It is awesome for POTS, autoimmune diseases, traveling, athletes, hangovers and anyone who is just exhausted, overworked and drained. 

It’s time to start living life to the fullest, which means having the health to do so! I am so grateful to have a home remedy for preventing dehydration and trips to the ER. I feel like I am finally starting to get my life back.