Health, mental health, Unveiling Invisible Illnesses

The Invisible Battle of Chronic Illness

Ehlers Danlos Syndrome is an umbrella of many ailments that fall beneath it. This genetic disorder manifests in many ways; various joints and organs are affected and there is a large range of severity on each spectrum. None of us EDSers are the same. We call ourselves zebras because most doctors think of horses when they hear hooves, but rarely it can be a zebra. We are the zebras in the medical world. There is no cure for EDS but each symptom can be managed separately. It is tricky because we sometimes have several specialists to manage each symptom, or comorbidity, which can resemble having a full time job. Juggling this health conditions not only takes a toll on our energy but it also takes up most of our time. 
On a regular basis, I see several specialists: cardiologist, electrophysiologist, pulmonologist, cardiothoracic surgeon, rheumatologist, neurologist, otolaryngologist (ENT), endocrinologist, gynecologist, gastroenterologist, and of course my general physician. I also sometimes see a chiropractor for traction and the use of some machines to help build strength in my lower back. I don’t have access, but need to see a geneticist, nephrologist, ophthalmologist and orthopedic specialist. That is about 12-16 specialists every 3-6 months. If I see fourteen doctors four times per year, just as a guess, that is fifty six doctors appointments in a year! I also end up in the ER, on average, about six times per year and usually have one or two hospital admissions… on a good year. This year, I had a few surgeries already and last year I had a pacemaker put in. Last year I probably had close to fifty emergency room visits so we won’t count that year. 
An average day for me is waking up around 2am-4am with lower back pain, thirst and several bathroom breaks. I never truly sleep through the night. I have a dysfunctional nervous system (dysautonomia) and suffer from Neurocardiogenic Syncope, Postural Orthostatic Tachycardia Syndrome, sleep apnea and issues with my body temperature, blood pressure, heart rate and more. My pain level has NEVER been under a five on the 1-10 scale. Not even for a moment. I usually have to be out of bed by 7-8am because my body is so sore when lying down for a long time. Even if I am sick, I have to get out of bed or the pain is so severe that I can not breathe. This means that I can not sleep for over six hours without a break, or the pain is unbearable. 
I take most of my medications and supplements in the morning. I usually start my day off with a headache, nausea, low blood pressure and a general feeling of being hungover but without the fun tequila shots. As I make it to midday, my entire body aches. Every cell in my body hurts. I feel so fatigued and exhausted, even if I didn’t do much. My head hurts and if I am around strong perfumes, chemicals or exposed to any chemicals in my food, I will have a runny nose, body aches and migraine with aura (visual disturbances). My lips and left hand go numb, simultaneously, about five times a day. No one knows why. My symptoms often mimic a stroke so I fear that one day if I have a stroke, I wouldn’t know the difference. I have chemical sensitivities that are hard to avoid. Wearing a mask and watching what I eat helps. Usually by 5-6pm, I am ready to collapse. Sometimes I make it through, with a smile on my face, because I try to live my life to the fullest. Despite how I feel, I push it to the limit to be the best mother, wife, friend, student and so on. I refuse to give up no matter how hard it gets.
By evening, I have made it through the day and usually my body temperature is low and I am freezing but somehow feel like I am burning up and running a fever. My temperature usually will read 96-97 degrees. It is incredibly uncomfortable to feel hot and cold at the same time. My chest feels heavy at night and if I lie on my back I start to feel fluid in my lungs. On a tough day, I will breathe so shallow while I fall asleep that I jump up gasping for air, with low oxygen and a racing heart. Other nights, I can’t sleep because memories flash back from the past when I was in the back of an ambulance or in the ER with chaotic arrhythmias. I close my eyes and hope to get to the next morning. It all starts over again in the morning. 
Depression can be a struggle for those who suffer with daily pain or frequent traumatic hospital visits. I recently came up with the term “Post Traumatic Health Disorder.” Depression can also be a factor because we feel like we have lost the person we once were and are prisoners to a body that doesn’t feel like it belongs to us. Our friends drop like flies the more we cancel on them, relationships are strained and many physicians don’t take us seriously because oftentimes these symptoms don’t show anything in blood work and we are passed off as a mental case. Many doctors are not familiar with rare, genetic disorders so they typically label us with anxiety or a catch-all diagnosis and send us on our way. We feel alone and like no one understands. It is scary, disheartening and frustrating. Seeing a therapist is important, as well as finding a support group.
Having an invisible illness is a battle and we all think of ourselves as warriors. We are warriors. We battle and fight every damn day. Tears are shed on the battlefield often and we watch our tribe through ups and downs on our online support groups. We have lost some and watched others give up. We keep fighting and supporting each other and raising awareness while we struggle to make it out of bed.
Always be kind to others, as you have no idea what they are battling under all that makeup and forced smile. And to those who are my fellow warriors, I believe you.
Health

What is Banana Bag Oral Solution?

Banana Bag Oral Solution is a specially formulated solution for vitamin deficiencies and dehydration. It is a drink mix and can replace the costly IV from an emergency room visit. The term “Banana Bag” is from the medical field, referencing IV fluids. The drink does not taste like bananas. In fact, it has lemon-lime taste to it. I prefer it to sugary sports drinks that are loaded with dyes, preservatives and artificial flavors. It is also gluten-free.

Banana Bag has been a huge hit for those with Postural Orthostatic Tachycardia Syndrome and also other Dysautonomia patients. It is beneficial for athletes, hangovers, the chronically ill, people with gut issues causing malabsorption and keeping general health issues at bay that are caused by deficiencies and dehydration.

This reliable solution restores the body with electrolytes and vital nutrients. It has been a crucial staple in managing my health, especially living with the Florida heat.

No sweeteners | No preservatives | No dyes | No artificial ingredients | No artificial flavors | No GMOs | No gluten.

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

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

What is normal?

Throughout my entire life, I have been living with chronic ailments. I remember being in  grade school screaming in pain from stomach issues. 


I remember when I was 7 years old, running around and my heart felt like it a hummingbird and I would get dizzy. The adults said that it was normal to have your heart rate increase when you run around. My softball coach in 4th grade would tell me to keep going. What they did not know is that my heart was in the 250 beats per minute range. When I was 15, the school nurse finally caught on. Supraventricular Tachycardia. They said I would outgrow it but it got worse and more frequent. It would happen 20 times a day. It was exhausting. But, this was my normal. 


I have always suffered from migraines, chronic pain, depression and fatigue. Every day I had a complaint and after years of being told I was just a hypochondriac, I stopped bitching about it. This was my normal. Normal was insomnia. Normal was waking up at 4am every morning in pain. Normal hurts. I’m normal. Suck it up, Misti! 

I discovered CBD Oil after a recent two month long streak in and out of ambulance rides, ERs and hospital admissions. “Everything is fine”, they said. “This is anxiety”, they laughed. I never felt worse and I thought my life was coming to an end. I went back to the hospitals I had been to, down to the the medical records department and got copies of every single record from the last two months. No, I was not having anxiety attacks. My neutrophils were dangerously low, lymphocytes high, my bun/creatinine was very elevated… to name a few. My 30 day heart rhythm monitor was a scary mess. The nurses and doctor mocked me out the door, dismissing my concerns. “Everything is normal.” Needless to say, my third electrophysiologist is the one. Third one is a charm, I guess. Everything was not normal. My body was giving up on me. I was withering away and living in fear of each day being my last day on Earth. I have three amazing children and the love of my life by my side to fight for. 


*Photo by Arlene Jacobs

After countless hours of research and second and third opinions, I demanded to get my ANA tested, which determines if you have an autoimmune disease. Though, they thought it was excessive and unnecessary, they placed the lab orders anyway. It was positive. 


Had I known this 15 years ago, before 4 cardiac ablations, one open heart surgery, preterm pregnancies, endometrial ablation, hysterectomy consults, years of self medicating with marijuana and wine, chronic episodes of depression, decades of minimal sleep to the point where I had sleep paralysis, endless pain and so on…. I could have gotten the right treatment and care and changed my diet and learned how to manage my health conditions. 



I should not be here. If I listened to my doctors and did not put up a fight, I could be dead. If I did not take aspirin each time I began heart attack symptoms, I may have not made it. I was having vasospasms, spasms of the arteries and vascular system, which was constricting blood flow to my heart and extremities. I was going into circulatory shock from sinus node dysfunction. And to think, they suggested Xanax and sent me out the door!

I have not been back to the ER in a month, since my last hospital admission, which lasted 5 days of no answers. I imagine it is a number of reasons: new heart medications, CBD oil, bedside essential oil diffuser, removing sugar and preservatives from my diet, finding  out my allergies and triggers. CBD is a huge anti-inflammatory and helps with pain, nauseous, spasms, and sleep disorders, which are a few of my medical issues. I sleep so much better! I can keep my heart rate down and blood pressure lowered and stay calm and relaxed. My menstrual cycle is no big deal now. Leg cramps and pain throughout my body is now managed and I am in much better spirits! CBD oil is such an important alternative to the slew of pharmaceutical drugs that have been pushed my way. 

Every day is a new day. I take each day at a time, treat my body right and eat healthy. I still have a lot of pain and now need a pacemaker but at least I am getting answer. I even got genetic testing for Elhers Danlos Syndrome which is also something I pushed during my endless research since I fit the criteria very well. 

Doctors look and me and say I look great. I look healthy. I look fine. 

I cannot stress enough how important it is to be your own advocate and educate yourself. Put up a fight! Take care of your body.