Medical Expense Help

Chronic illness and the boat-load of medical expenses that come with it seemed to hit my husband and I out of nowhere last year. Just over a year ago, we moved from New Jersey to North Carolina. The first two months here were hectic, but we settled in quite nicely. We loved the area we moved to and we were stoked to explore our new surroundings. However, after just two short months, something wasn’t right, and we embarked on a journey that neither of us could have prepared for.

I woke up one morning last April with terrible upper back pain. A day earlier, I had put together furniture and attributed the pain to most likely being a bad muscle pull. A few hours later, a migraine started. I took Tylenol and went on with my day. That afternoon, my family from out-of-state arrived, as they were visiting for a long weekend. I was so happy to see them, but I still didn’t feel quite like myself. I remember we went to dinner and I stared off into space for about five minutes just thinking about how bad the back pain felt. Fast forward to sitting in a movie theater about two hours later: my heart started to race, and I felt this rush come over me. I felt nauseous and was trying my best not to vomit. It felt difficult to breathe, my upper arms felt very heavy and the room was spinning. It felt like I just ran a mile at full speed and did some serious upper body weight-lifting, but I had been sitting down the entire time. The feeling of your heart pounding out of your chest for no reason is enough to ignite anxiety. It felt like I was having a heart attack, but I was too scared to admit how afraid I was. I got up from my seat once my heart rate seemed to calm down and after a few minutes, I was able to exit the theater and purchase myself a bottle of water. I didn’t say much to my husband or my family, only that I needed some fresh air.

What I thought was a fluke, a one-time occurrence, something I could brush off…quickly became the biggest nightmare of my life. Over the last almost two years, I have been to the Emergency Room over 20 times and admitted into the hospital for a few nights in June of 2018. My care team continues to grow by the day it seems.

After months of not knowing what was wreaking havoc on my body, I was diagnosed with “Neuropathic Postural Orthostatic Tachycardia Syndrome” in November 2018 – also known as “POTS."  POTS isn’t a well-understood syndrome and it is often a secondary set of symptoms to other health issues like autoimmune diseases, mast cell issues, viral illnesses – the list goes on. POTS is a form of Dysautonomia, which is a disorder of the autonomic nervous system (ANS). To learn more about Dysautonomia and POTS, please visit: http://www.dysautonomiainternational.org/page.php?ID=34 

Almost every day is a challenge to get out of bed in the morning. Most of the time I am woken up in the middle of the night by my heart beating a mile per minute. Some days I will sit up out of bed and my heart rate will be in the 140’s. I experience tachycardia (not as often as I used to thanks to one of the medications I am on),  premature ventricular contractions & premature atrial contractions (skipped heart beats), pre-syncope (feeling like I am going to faint), chest pressure and pain, back pain, joint pain, weakness in my upper body, weird muscle twitches, adrenaline surges, internal and external tremors, nausea, dizziness, skin discoloration, and occasionally my body will throw in a rash and an intermittent fever. It seems that new symptoms pop up every week and older symptoms that I thought I had under control suddenly come back.

I am still at the beginning stages of learning how to manage my condition. I found a doctor who listens to me and takes into consideration everything that has been going on. We are in the process of doing further testing and trying to get to the bottom of what is driving POTS. In addition, she sent me out of state this past June (2019) for further evaluation by an Autonomic Specialist. Over the course of six months, I have had so many tests that have tested my muscles, my nerves, my neuro-cognitive function, my heart - the list goes on. 

Though I am beyond grateful to have come as far as I have and I am extremely fortunate to receive the level of care I am receiving, you can imagine that all of this comes with a pretty hefty cost. We cover about $400 a month in co-payments for specialists and about $150-$200 a month for medications and supplements. We have existing payment plans set up with hospitals and various other providers that total over $7000. Those monthly bills total to around $250 a month.

These unforeseen medical expenses have put quite a financial strain on my husband and I, as we are just about affording day-to-day life while attempting to manage the amount of medical debt we have acquired since the beginning of all of this. Almost every expense has been put onto our credit cards - some of which are now maxed out. In addition, a new deductible starts on January 1st. My deductible is $1250 + $4800 in out-of pocket-expenses. 

That being said - to anyone who would like to donate to this campaign and aid us in paying upcoming medical costs - thank you from the bottom of our hearts for your love and support. We greatly appreciate you. Words could never express the level of gratitude we have for everyone – our family, friends, total strangers - for all the support we have received over the past year. Whether the support is prayer, financial, physical or emotional - thank you, thank you and thank you <3 

Below, I have included a few pictures that show just some of the very many “perks” that come with my condition. Also, if you'd like to learn more about my journey with chronic illness thus far, you can visit my blog: thechroniclesofchronicillness.com

With Lots of Love & Gratitude, 
Jacki & Dan

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Donations

  • Bridget Parker 
    • $10 
    • 7 mos
  • Jenna DeLillo  
    • $50 
    • 8 mos
  • Kristina DeLillo 
    • $100 
    • 8 mos

Organizer

Jacki H. 
Organizer
Durham, NC
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