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.


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.


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. 


Day 5 Postoperative Pacemaker Update 

The past couple of days have been rough.  I have had sugar the last two days when I felt worse so I am hoping eliminating sugar again will help. I usually don’t have sugar in my diet but caved and had some dairy free Ben & Jerry’s almond ice cream. Basically, I have been having PACs, which feel like extra heart beats and bouts of Inappropriate Sinus Tachycardia. I have had these issues prior to the pacemaker that I just got on June 8th (2017) but was unable to take medication due to chronic Bradycardia, a slow heart rate. Now that I have the pacemaker as a safety net, I am able to take medication to help with the other issues. At this point, I have to wait 6 weeks to let the pacemaker fully heal and the meds to kick in and then we can re-evaluate the situation and discuss a possible Cardiac Ablation, which would be my 5th. I would then be 100% paced. I am trying to be positive and hope that avoiding sugar will help calm things down and that my heart is just angry and still needs to heal and adjust. In these last two days I have had PACs every single minute, sometimes more, sometimes less and about 5-10 episodes of Inappropriate Sinus Tachycardia (IST) each day. The IST will kick in randomly, often when I lie down from sitting up. My heart rate goes from 60s to 140s in seconds and my chest feels tight and constricted while my lips get cold and tingle or go numb. It is VERY uncomfortable and annoying, to say the least. The PACs sometimes will feel so strong that they jolt me out of bed. 

 I saw the doctor today and am still paced in the 80 percentile and they were surprised to see how often it kicked in. When my heart rate was higher from walking or with activity, it would have dropped and I could have passed out had the pace maker not been there. That is called Neurocardiogenic Syncope, which was confirmed in a Tilt Table Test I had a few weeks back. I am suffering from Dysautonomia but have not found the right doctor to determine why. I am currently trying to find a good rheumatologist to look into a proper diagnosis. Most signs point to Lupus (SLE) but nothing is set in stone. I definitely can tell how beneficial this pacemaker is and a life changer at that, I just really need to get the the bottom of what is causing my body to suffer. 

I guess I just get worried because I also have had open heart surgery in 2011 for severe Aortic Insufficiency. I had my valve repaired and currently all 4 valves have mild insufficiency. I also have thickening on my aortic valve and a thickened heart muscle with slight left ventricular enlargement. With all of this and an undiagnosed auto immune disease, I sometimes have a hard time keeping my chin up. I also have recently discovered that I have multiple complex cysts on my thyroid, which will need to be biopsied for cancer. 

Never take your health for granted. It is really tough being patient and waiting AND WAITING for answers. In the mean time, I am home in bed and away from my salon. I would love to be back to work and travel and run around and feel free again. I am currently trying to get disability so that I can ensure medical coverage (since there will likely be billions of dollars in cuts for Medicaid) and qualify to go to the Mayo Clinic so that I can get the proper care and treatment that I have needed for a decade or so.

I think that is all for now. Rubix cube still being solved. To be continued….


America Hates Me

Soon, the president of the Divided States of America will be cutting almost a trillion dollars for Medicaid cuts. As I often hear about the complaint for our tax dollars being spent on helping people like me, I never hear any disgruntled comments about the rest of our federal tax spending. We are just shuffling money from one area to another, from healthcare to Military and Defense. And state taxes? How dare we pay for those roads that we never drive on or the schools that our children don’t go to? America is not free, is it? 

Guys, only 28% of our taxes go towards healthcare. No one bitches about where the other 62% goes. Why is that? Do we need to educate ourselves more?

We are very privileged and I am grateful that I have the opportunity to bitch about getting the wrong Starbucks order, don’t get me wrong. I know it could be worse. However, I know it could be better. 

Almost 60 countries Have Universal Healthcare and some have mandated this since the early 1900s. Virtually all of Europe, included. The United States refuses to get on board. We can’t get it right in 4-8 years. It takes time… flipping from red to blue, hot to cold every decade is a disaster when we can look at several dozens other countries that have been doing it for decades. And no, don’t tell me I need to leave my country. My point is that there are answers out there but we have no humility and are drowning in pride and so divided that we would rather turn one half of our own country into a third world status than to pay a couple bucks a week in taxes for healthcare. 

Oh, but we will gladly pay it for military. Just not for the environment though. Seriously, all this is, is taking a budget and moving it somewhere else and that is screwing over your neighbor. New York was known as the melting pot. Now we just want corn dogs and apple pie.

Here in America, we feel that we work hard and must earn our right to be medically treated, granted we have a trust fund and come from wealth or were gifted with healthy DNA. Well, guess what? I work my ass off. I have never only had just one job. I do not come from a wealthy family and I was born with a rare disease. I have even gone to work in severe debilitating pain or irregular heart rhythms and just smiled and pulled through because I have a family to feed and a roof to keep over our heads. I have gone to work instead of the ER because I needed the money. I sometimes would spend days recovering from this… Shutting down my phone and crawling into bed, ordering pizza for the kids and hoping that I wake up the next day. Everytime I would get ahead I would get knocked back down and have to start over, scraping by. 

If I had my health, I would be rich from how damn hard I work and my infinite ambition. I don’t qualify for health insurance and I usually don’t qualify for Medicaid. Seldomly I get access to Medicaid and get the luxury of medical coverage for about 6 months but it is never enough time. 

I am what America hates. Your tax dollars paid for my open heart surgery. I digust you. This year, you win. Your votes will take away my coverage. And when that happens, I hope that you think about my children and the mother that you will take away from them so that you can afford a sweet new car with heated leather seats and Bluetooth and more military whatever. 

I have had some very close calls earlier this year and was often dismissed because I looked healthy. I have spent 32 years of my life looking for answers on my own while being medically neglected, year after year. Even recently, I had my Tilt Table Test and wore my usual light makeup and rosy blush. It is my daily routine. If I don’t cover my fatigued eyes and pale skin then I will be asked if I am sick or tired all day long. The nurse said I looked great and that likely this test would be a breeze for me. “She still has color,” he said seconds before my blood pressure bottomed out and my heart rate plummeted and I felt nauseous and horrible, to say the least. Maybe it’s Maybelline, because suddenly I was head down and being pumped with fluids. Shorty after, I went into hypoperfusion. I was stabilized quickly but despite how horrible I felt, I was relieved to have it all on paper and proof! Each and every ER visit, ambulance ride and hospital stay, dozens in The beginning of the year, my symptoms were dismissed as anxiety and I was prescribed Xanax and Valium and sent home to die because our healthcare is capitalism at it’s finest. It is corupt and unfair because we built it this way and refuse to do anything about it. We are blind. Wake up! For most, they are not poor enough for assisted coverage but not comfortable enough to swing the extra bill for insurance on their own. It is a lose-lose situation. Maybe heart attack statistics would go down if we weren’t stressing about how to afford a doctors visit! 

Despite my 2011 open heart surgery scar and four cardiac ablations, I still was not taken seriously. Hypoperfusion, or Circulatory Shock,  was diagnosed by my neurologist after my clear brain MRI and EEG of my brain waves rules out seizures and any neurological disorders, as well as my recent positive Tilt Table Test, pointing back to cardiac. I went through so many years of tests and no answers but refused to believe that this was anxiety. I was the happiest I had ever been. Finally some progress but time is running out until coverage will end. Life feels like quicksand. 

At one point, I was diagnosed with Acid Reflux, which I do not have and was given medication for that. I was diagnosed with Anxiety and Panic Disorder and given drugs for that. I do not have anxiety. I refuse to take those drugs. Before ruling out seizures, I had debilitating migraines with auras and was given seizure medication. Turns out that all I had to do was cut out preservatives and dairy and my migraines went away. I can’t help but wonder how many people are sent home drugged up to die with a misdiagnosis. How many “young and healthy” looking women were sent home with a new drug dependency while they really just had a deficiency that could have been managed? 

I have children, a business or two, a fiancé and I work very hard every chance I get, when my body allows it. Just because I look fine, does not mean that I don’t feel like shit and have chronic debilitating symptoms. I would be devastated to give up this fight and be home in bed all day, every day. Sometimes I feel like I should be but I have some much to live for and want to see as much of the world as possible,  even if each step hurts and I have to stop often. I will get back up and keep trekking. I am not giving up. 

Fortunately, my patience fizzled and I became an advocate for myself and finally made progress in a diagnosis to get proper management and treatment. My next step is a pacemaker on June 8th but there still needs to be an answer as to what the underlying issue could be. Currently, I am waiting on results for Elhers Danlos Syndrome and Marfan. I recently requested ANA blood work and tested positive, meaning I have one of 120 autoimmune diseases. 

My goal is to help raise awareness to doctors and medical staff about rare diseases and that when you hear hooves, sometimes it could be a zebra. I want to inspire others to get healthy and educate themselves on nutrition and what our bodies need to thrive and learn how to not walk away from doctors without answers. 

I hope that I can still fight this battle or open someone’s eyes to how wrong this government is. I just want to live. I am not ready to go. Please consider people like me before you strip what is left of our medical coverage. Please think abouty soon to be husband and my three children before you ban me from healthcare equality. I am never going to give up but I may die trying. 

If you still feel like reading, I urge you to read Marie Claire’s publication on women’s healthcare.