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.
mental health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Depression and PTSD with Emily

You never really understand something unless you have lived it. Many of us don’t know how to respond when we know someone is deeply hurt and struggling. Saying something like, “be positive” or “everything will be fine” is not a bandage to anyone who struggles with mental health. It doesn’t make them a negative person. As a society, we are never told that it is okay to feel. We all are trained to suck it up with a smile on our face, making mental health a truly invisible illness. Take Robin Williams for example. He was charismatic, funny, talented and all around a great guy but yet he took his life.

Emily shares her story in hopes of raising awareness, letting people know they aren’t alone, and teaching others how to be a friend to those who struggle with mental illness.

What is your official diagnosis and when were you diagnosed?

I have depression and PTSD. I was diagnosed by my therapist this year around March. However, I have been diagnosed with manic depression since I was 14-15 years old.

Looking back, how long where you having symptoms before you got diagnosed?

My depression started when I was really young, I would say about 8 or 9. When you’re younger, not a lot of people take mental health seriously. It wasn’t until I was 15 or 16 that I saw a therapist for the first time.

What do you do to keep your symptoms managed?

I go to therapy. I’ve tried almost every depression and anxiety medication but they don’t work well with me. CBD tends to be the only medication that helps manage the symptoms. But I have to see my therapist once a week, we also do coping skills, like grounding, to help through panic attacks or flashbacks.

For my PTSD, I avoid obvious triggers, block certian things on social media, and I make sure people around me know my main triggers. I have to make sure any movies or places I go won’t have those triggers involved, so there is a lot of work to do before just going somewhere.

What advice could you offer to someone who is currently struggling with the same illness?

That the fight isn’t over, but you have an army beside you even if you think you don’t. Treatment is expensive but there are orginizations to reach out to help. I know it’s really mentally taxing to always have to think about your mental illness. You have to stay on top of it because one slip can spiral you. Life is so worth it though. The next week will never be the same as this one.

What is the scariest moment you have experienced because of your illness?

When your life is in your own hands, and you don’t want to be alive. When you are in a really bad low in your depression, your PTSD isn’t managed. It’s really scary being on that edge of giving up and letting yourself fade away. When I wouldn’t eat, or even move was my scariest experience. It lasted for a few months until my support system got me to a doctor.

How do people react when they discover you have an invisible illness and how does that make you feel?

As soon as someone hears about my illness, their face changes. They get this look in their eyes of pity, like I just turned into a glass rose in front of them. They never talk about it and pretend it’s not there after a while. It’s not everyone, but it’s the majority of the time. It makes me furious, mostly because I want to talk about it. I want people to know it’s not just me and there are other people that need you to talk about it too.

What way can others show support to someone with an invisible illness?

By being around and a voice for people with depression and PTSD that can’t reach out. With my illness, sometimes I can’t reach out, it stops me from getting help. Be educated in knowing how to read the signs of your friend or partners mental illness. Also know it’s not something that you can “fix” or help someone get better from. It’s a life-long illness that doesn’t always have a magic pill to fix it. So the best way to support someone, is to just be there. Talk about mental illness, keep talking about it because that’s what supports the idea therapy and help should be more mainstream and accessable.

I know you lost someone close to you who has also battled with depression. How has that affected you?

Losing Nate was one of the biggest eye openers of my life. Not only with him leaving like he did through suicide, but everything after. I learned about the responsibilities loved ones have after someone passes. Seeing everything I had to go through with his death made me realize how much my loved ones would have to go through if I died the same way. It’s unbearable. I joined a support group of people that lost someone to suicide almost immideately because it felt like I either wanted to join him or wanted to live to give that to him. The extremes in your grief are insane and almost impossible to understand because everyone feels them at different times.

Is there anything you wish you could say to him?

Oh, there is so much I would say to him. A good summary would be that I forgive you, and I am working on forgiving myself even though you told me it wasn’t my fault.

What are your triggers and do you feel comfortable explaining how you developed PTSD?

I developed my PTSD when Nathanial died. I did have previous PTSD that I didn’t know about yet, but this was the big set off. My triggers include suicide, blood, abandonment and certian trigger words like promises.

What type of advice would you have for anyone in the same boat?

You have to keep going. Even when you think you were doing really well, but have a panic attack for 6 hours crying one day before work. You still go. You remember that attack will not last forever; you will be okay. You get your “war paint” on, as I call makeup, and go to work. We push through but never forget to work through it too. Learn from every emotion you feel, learn what will make you happy and to start weening out the things that set you back into the dark. Because your light is so bright and it deserves to be out in the world for everyone to see.

Biggest inspiration? It can be music, anything…

Honestly, the people I am closest to are my inspiration. My friends and support group do things like invisible illness blogs, that help others who think they are alone, get connected. Nothing is more inspiring to me then helping people live their best life. My personal inspiration, having something to look forward to is Live Action Role Play (LARP). Making costumes, characters, relationships, meeting new people, being in the woods for a weekend fighting with boffer weapons. It’s absolutly an inspiring experience that helps as a coping teqnique too in a lot of ways.

Favorite quote:

“Everything’s gonna get lighter, even if it never gets better.” -Mates of State.

Three things you can’t live without:

My best friends, Spotify, LARP

What are your goals? Where do you see yourself in five years?

It’s crazy to want to do something so far away as 5 years with my illness. Recently, I see myself getting ready to open and own a bookstore/venue with my best friend. A goal is to finish becoming a licenced sign language interpreter. Mostly, in 5 years, I want to have lived so much, but still say that I have so much more living to do.

1-800-273-8255

Health, mental health

Sunday Unplugged – A Day Without Social Media

It is so habitual to see then number in the red bubble grow and to get rid of it. Or, we simply can’t just be in thought; we have to see what everyone else is up to or what we may be missing out on as opposed to actually letting our imagination wander. How dare we sit at home while others are checking in and posting their exciting life. This make us thirst for constant activity and new experiences rather than realizing that life is also intertwined with down time.

It becomes burned into our subconscious, to click the icons we constantly open on autopilot. We are addicted to superficial, instantly gratifying encounters behind a screen, rather than engaging on a personal and intimate level. When is the last time you made direct eye contact with someone and held a conversation? We so easily pour out from our fingertips but walk by with our heads down in person.

I started boycotting social media on Sundays and as my first day in, I already accidentally clicked the icon three times by 1pm. It’s not even that I must check it but that it has become so habitual to stay caught up. While working on my assignments, I picked up my phone a few times to distract myself. What urges us to pick up our phone to indulge in something rather that the task we are currently doing occupied with? We constantly need to disassociate our presence with life around us, to travel in a virtual wormhole into other’s polished and edited moments.

In the long run, it creates the need and urgency to produce experiences for our feeds to show and tell, pausing to capture it all in real time. Instead, we should share our memories after the fact. These habits can also be dangerous as to expose so much information from where our kids go to school to when we aren’t home, and so on. Many will struggle with insecurities from comparing their low times to everyone’s highlights. We often forget that our friend’s lives are also filled with low times as well, only they just aren’t published.

It’s time to start setting restrictions on ourselves, not just our kids. Setting times to check our phones or milestones throughout the day to allow us to indulge in social media and our online world is a great way to start. For example, checking social media on our lunch break and before dinner rather than all day. Would you be embarrassed if you knew the number of minutes per day or per week that you spend on social media? I know I sure would. Make it a point to engage with others in person or contact someone via text, call or email to see how they have been. How often do you communicate to those who do not have social media? Another way to help get the reigns on your addiction is to start by giving up a day per week to focus on yourself and your family. Creating these healthy habits will allow us to live in the moment and view the world in front of us rather than through a screen. So, the next time you are at a concert or wedding, put down your phone and enjoy the experience. Take it all in because the view is much better without a device in the way.

From my day without social media, I have discovered that even just by lunchtime, I got through my school assignments faster, I was inspired to write a lot and without distractions; my day was much more productive. I feel as though I gained many hours of my life.

Health, mental health, Unveiling Invisible Illnesses

Health PTSD – Warrior Status

There are some evenings when I can’t help but think about the nights when my heart would struggle to beat. By the end of the day, my blood volume would be so low because I was never educated on my health conditions or how to manage my health and had no idea what was going on. I would go all day without drinking water. I avoided salt because I assumed that’s just what you do, especially with heart issues.

Here is a quick run down about my health history:

Postural Orthostatic Tachycardia Syndrome was just a small fraction of what I had going on. Last January (2017) I was still very in the dark about my health. Even though I already had four cardiac ablations for Supraventricular Tachycardia, caused by being born with an extra electrical pathway in my heart that caused rapid heart rates and extra beats, I still never had a real team of doctors who had my back.

Wolff-Parkinson-White Syndrome made it very difficult to have a fully successful ablations due to the extra pathways in very difficult and rare spots of my heart. My electrophysiologist often noticed two P Waves on my EKGs. The P Waves are the little squiggly line that shows where the heart beat originates.

After four cardiac ablations, I needed an aortic valve repair. This is done with open heart surgery and cracking open my sternum. My aorta valve was regurgitating blood flow backwards. This caused shortness of breath and other issues.

Having the ablations did not fix my rapid heart rates. It reduced them but I still got them and often. I needed medication to slow down my heart rate but I also had bradycardia (slow heart rate) so I was unable to take medication for about a decade. I would bounce from 45 beats per minute and jump up to 150, all day. I was diagnosed with Neurocardiogenic Syncope and Sick Sinus Syndrome. This means that my heart would randomly plummet, while doing simple tasks, causing me to blackout or set my heart into a scary arrhythmia. I developed a dysfunctional sinus node. The sinus node produces your heart beat, like a natural pacemaker.

Back to 2017… As if nothing mentioned above wasn’t scary enough, including my brief encounter with cancer, January 5th, 2017 was the scariest day of my life. Unbeknownst to me, my blood volume was dangerously low and I was dehydrated and creeping up to pre-diabetic status due to a careless diet and love for sugar. I wasn’t taking care of myself the way my body desperately needed me to. My heart went tachycardia, which wasn’t anything I wasn’t used to, but then the rhythm changed to chaotic. I was going into a potential fatal arrhythmia.

We called 911 and my husband (boyfriend at the time) held me in his arms as my limbs fell to the side, with no blood flow. I was going into circulatory shock. I told him I loved him and to tell my kids I loved them and the blurry lights in the distance arrived closer. Suddenly I felt my heart convert back to a normal (but fast) rhythm and I could breathe again and move my arms. This happened again and again, several times a week, for months.

I was continuously dismissed, labeled with anxiety and even prescribed acid reflux medication for heartburn. I did not have heartburn, I was having chest tightness and pressure but this was just a small example of being disregarded and carelessly misdiagnosed. Eventually, I had a 30 heart monitor on to capture every episode. The monitor was hidden under my shirt and robe. My body would shut down before the doctor’s eyes as he mocked me and stated it was just anxiety and an EKG or heart monitor wasn’t necessary. Despite my history and the fact that I was the happiest I had ever been, I was always sent home or they couldn’t catch an episode.

Six months later, I finally found an electrophysiologist who set me up with a pacemaker that I needed ten years ago. My neurologist also looked at the tests and confirmed that what they thought looked like an anxiety attack was my body going into circulatory shock. I can also finally take heart medication to keep the fast rates at bay, now that I have a pacemaker.

Like a thick gloom, blanketing you and swallowing your body, the memories take over. There were times that I literally begged for my life. I could barely breathe and my arms and legs lost color and I couldn’t move. My body would start shaking vigorously as I took small rapid breaths. “Please help” was all I could pathetically mutter to the unconcerned nurses who assumed I was a drug seeker.

Those six months still haunt me, especially at night. No doctor EVER thought to ask, “Why does this young woman have such a unique health history?” No one thought to do genetic testing or to ask questions. They all let me slide through the cracks.

I’m here and I am still fighting. I will always fight, until I can’t anymore. I am here to stand up for others like me. I am here to inspire others to advocate for themselves and to not give up. I am still here.

Even though my story isn’t over, I still continue with sleep apnea and my aortic valve has hypertrophied. I will need open heart surgery once again, with a pig valve and possibly in the near future. I will need a new pacemaker years to come. I don’t have insurance so my sleep apnea is not being treated. I don’t know what to expect in the future but I do know that I will love every moment that I am given.

  • Educate yourself on your health conditions.
  • Get every medical record and keep a file
  • Print information on your rare diseases or disorders to give to your medical professionals
  • Find a support group or therapist
  • Eat healthy and stay hydrated