“’round here” – morgan’s story on congenital heart disease and asthma

Morgan and I have been friends online since at least my first year of university (which started in 2009 . . . also making me feel like I will never get out of there :]). Between Morgan and I, we have a few shared diagnoses (asthma, anemia and congenital heart defects), but completely different experiences within each of them. We’ve had many long IM discussions late at night when things weren’t going so great, shared many songs due to our mutual interest in picking apart amazing lyrics, offered each other support and advice at times we really needed it, and shared our triumphs with each other. She was a great source of information for me when I was struggling to navigate the oddities of my own asthma, and shared her knowledge from the perspective of not only a Respiratory Therapist, but a patient.

I’m thankful to share some of Morgan’s perspective here today, in a post that truly captures the essence of many of the pieces of the puzzle of not only the chronic disease stories, but also the very things that brought us to become friends in the first place!  Thanks for sharing, Morgan!

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One thing thats hard about Congenital Heart Disease, Arrhythmias, Anemia, Asthma, and GERD is that they are “silent” diseases. No one really knows you have them unless they pick out the little clues: the scar, the exhaustion, the deep breath and stopping in your tracks to catch your breath when your heart is pounding out of your chest, the inhaler, the posture you take when you arent breathing so hot. This makes it hard for others to understand what its like to deal with. No one really “gets it” when you are having a bad day. People can’t fathom what living with chronic illness is like because they cant quantify it or qualify it.

One of my favorite coping mechanisms for life in general is listening to music; I love music in general, but one day I was in a rough place mentally (actually, I was dealing with preparing for a difficult procedure), and I heard one of my favorite songs in a WHOLE new light. It has changed my view on things as well as helping me get a better grasp on what it’s like to live with and grow up with chronic and invisible illness. It has also given me an easier way to explain things to others in a more tangible way. (its amazing what a little perspective will give you) The song is “Round Here” by the Counting Crows, and parts of the song really hit home…

“Step out the front door like a ghost
into the fog where no one notices
the contrast of white on white.”

When you have an invisible chronic illness going on no one gets it: the only indication is the scar, inhaler, etc It’s not tangible to the outside world, vecause its not visible, therefore, its hard to quantify.

“I walk in the air between the rain
through myself and back again
Where? I don’t know.”

While I’m doing my daily routine, especially when I am having a rough day I’m “in my head” alot trying to deal with the mental/emotional part of living with chronic/invisible illnesses, I’m putting a face on to just get by. It hardly ever gets me anywheres, but its definitely a journey mentally and physically.

“Round here we always stand up straight
Round here something radiates”

Again, a picture of normalcy, busy doing day to day things, conforming to the norm and trying to give off positive vibes, because if you arent positive, people around you tend to feel sorry for you.

“Round here we’re carving out our names
Round here we all look the same
Round here we talk just like lions
But we sacrifice like lambs”

back then I was busy at school and work trying to continue with the semester, trying to prepare for the procedure I was going to have mentally, and getting ready to take my boards; now I’m day to day at work trying to become the best I can be trying to make a living. I look no different than any of my classmates and co-workers, and therefore I am no different in most peoples eyes. It’s hard to be understood when your symptoms aren’t visible. If symptoms were visible, I’d have a hell of a lot of “well, why are you still trying to work” comments. My co-workers may understand clinically some of what I am dealing with, they know what SVT or Ventricular Bigeminy looks like, they’ve had patient’s who were short of breath but they don’t get it, they don’t know how it feels, they don’t see how it applies to day to day life, and how it affects my performance and my ability to work. I go to work every day, I advocate for my patients’ best interests. I try my hardest to be the best I can be, but sometimes I just cant be that all the time; sometimes I just need to break down and cry.

“Round here hey man we got lots of time
Round here we’re never sent to bed early
and nobody makes us wait
Round here we stay up very, very, very, very late”

Chronic illness can make you feel alone at times, especially when its silent, this lyric represents to me feeling alone in the work environment, but it also represents me feeling alone in having to take over my healthcare no one’s running that show any more. I have had to learn to advocate for myself, I’ve had to learn the in’s and out’s of whats going on with my body and how to deal with it. No one’s going to be there to tell me to take my meds, or when to go to the doctors, but on the other side of that, I’m the one who has to buck up and deal with the consequences when I’ve forgotten my meds, or missed appointments, or not gotten to the doctors when things aren’t right.

“See I’m under the gun round here
Oh man I said I’m under the gun round here
and I can’t see nothing, nothing round here.”

I’m under alot of pressure day to day, needless to say, sometimes it’s hard to get perspective, sometimes its hard to see the forest for the trees, but sometimes it helps alot when I’m not feeling well to be really busy, because I can put my head down and just get it done, but that can lead to not taking care of myself, forgetting to take meds, not getting enough sleep, not listening to my body, etc

It’s amazing how preparing for a big undertaking medically can put you in a frame of mind to see things differently. It’s also amazing how your mind can give you a perspective like this to help you through a tough time. To this day I listen to this song, and it speaks to me.

I think the key to living with chronic and invisible illnesses and living well with them is to find coping mechanisms, to reach out and connect with those who you can relate to. Listen to music, have fun, listen to your body, and most of all: Live life!!! Life has strange ways of teaching us lessons, all we have to do is be open and receptive to them. This is one of the biggest life lessons I have learned so far

“One Life, One World, One Chance, and I Don’t Wanna Wait, Wait!!!”

Morgan lives in Vermont and works as a Respiratory Therapist, where she is able to apply both her clinical skills and understanding of the patient perspective to those she helps on a daily basis. She loves music (as evidenced above!), coffee, cycling, cooking and spending time with family and friends. Currently, she and her fiancé are also busy preparing for their wedding in October 2013–congratulations, Morgan!! :]

“we got hearts of gold, but they don’t always work right”

–against the night, ari shine

heartfailure.jpg

I am a congenital heart defect [CHD] survivor — I had it easy. My defect, an opening between the aorta and pulmonary artery, closed by itself shortly after I was born, with the only lasting effect a slight and “innocent” heart murmur. Friends have shared stories of their CHD experiences — one who was not aware of her defect until adulthood, another who has memories and scars from childhood, but still needs to pay close attention to cardiac symptoms on a daily basis and check in with her doctors regularly. We are CHD survivors.

One of my best friends from grade two forward did not have this experience. She had multiple surgeries on her heart from the time she was young . . . and died suddenly and unexpectedly when she was twelve–in the seventh grade.  There is still work to be done.

My friend Mike is a young person living with congestive heart failure, living with day-to-day uncertainty of what will come next, and when.  Waiting for answers, and continuing on with his life while he and his team try to determine the next steps.  Longing for answers and options.

This weekend, my best friend’s dad had a moderate-to-massive heart attack.  Things are rough for them, so please pray or send vibes their way.  Life will never be the same for her dad or their family. There is a lot of desperation, a lot of prayer, a lot of tears . . . and a lot of hope. The story is still being written.

Our stories are all different.  Yet we live with “hearts of gold that don’t always work right“.

. . . Without anything to say about it. It has little to nothing to do with our choice, it’s all chance.  Our hearts choose our realities.

We do our best to live.  Hope. Love. Run. Laugh.

We do our best to fight.

February is Heart Month.

Join the fight.