Just Let Me Cry

Emotions... blah.  Sometimes, I am grateful for them. Today, not so much.  It has been a roller coaster kind of today.  I understand this is normal at this point of diagnosis. Tonight, as I reflect on what I am learning about my heart, I will admit.... I am a bit nervous and dare I say.... a bit scared.  I truly believe that faith has no room for fear.  However, I am human and tend to feel human emotions on some days. Today is one of those VERY human days.  Maybe I will refer to them as my Mutant Days, since I can become rather cranky when I am feeling this way.

I do not usually intend to ignore the challenges of others.  Right now, life has handed a big pile of ... stuff on my plate and as I am in the process of learning how to work through each bite, I have been a bit neglectful of those around me.  I have not been ignoring those in my immediate living space, but those outside the immediate family bubble have been a bit out of my reality.  I hope they forgive me for that.  When you are handed a diagnosis such as ARVD, it is a lot to adjust to, especially when you are already dealing with major life changes. I always thought I would be one of those people that if handed a huge challenge such as this, then I would say, "It's all good. We will just beat this thing!" I have tried.  Truly. Today, though, that positive attitude seems a little out of touch for even a generally positive person like myself.

To help deal with this issue of Mutant Crankiness, I decided to do a little research, while eating my handful of chocolate- of course! I want to learn about the emotional side of this condition. I want to be as prepared as I can for whatever is coming. I found this tidbit from Johns Hopkins Medicine:

"For many patients, the diagnosis of ARVD/C comes from out of the blue. For others, it explains a long history of symptoms that were never understood. (This one is me.)  In either case, patients and their families may feel a sudden loss of well-being and a perception of helplessness. (Yep!!)  With any diagnosis of a chronic illness, it usually takes time to adjust to the emotional and psychological impacts. Most people learn to cope by gathering information about the disease and find comfort knowing that with proper medical care, they can find ways to live healthy and productive lives."

Phew! I sure hope so!!  I want to live a healthy and productive life.  I will live a healthy and productive life!
Tonight, I learned that my sister's long time friend of 20+ years underwent a heart transplant a few days ago.  I have been so focused on resting my own heart and some other life situations, I have not been thinking too much about the hearts of others.  Dee is amazing and I am grateful for her team of doctors that have pulled her through this ordeal.  Her new heart will help her be even more amazing.  We are all touched by the life of the young man lost in the process as well and our prayers are with his family.

It is obvious I have much to learn.  I do not like this phase of grief- the cranky, mutant part.  Tomorrow will be a better day, where I will reach out and help lift someone else's spirit.  I am grateful for the tomorrows.

My name is Jenny McKinney, I really want some chocolate and for tonight, just let me cry.

I am Not My Disease

This is ..... a bit tricky- writing about a disease I barely know anything about, while trying not to think of chocolate to often. I am not sure what is harder some days: having to rest so much because my heart is not working right, or having to hurry and lick my fingers ...... again ..... because I snuck into the chocolate chips ..... again .... and I don't want the kids catching me.

Sometimes they are the only source of chocolate I can find when I really, really want some chocolate, which is pretty much all the time.

I would say I am an addict to many things. Chocolate is definitely one of them. Learning is another. No, I am not addicted to drugs or alcohol. (I have never touched those things in my life. Well, there was the one time I accidentally got drunk ..... Ah, another day, another story.) There is much to learn about ARVD.

Why the blog title about Chocolate? Simple. I love chocolate. I thought if I keep the humor in this blog a bit here and there, I would not focus so much on the dreary parts my condition. I have a pretty good sense of humor. Hopefully, it will come through now and then.

I have recently been diagnosed with ARVD (Arrhythmogenic Right Ventricular Displaysia.) When I say I say "recently," I am talking about a week ago. I have only began to research and have so much to learn on this heart journey. My condition is not exactly common. (1 in 5000 cases documented). And since it was only discovered in 1982, there is more to be understood, I imagine. I have not yet found a lot of personal stories on the web regarding this condition, so I thought if I shared my own, it may help someone along the way.

I am not my disease. It may limit what I do with my body these days, but I am not my disease. I am a happy, joyful person that seeks to uplift others through service and especially music. I am married to my forever sweetheart and mother of 4 beautiful, incredible children. Now that I know about this condition I have, I am especially grateful to have been able to bring them into this world. I plan on staying around as long as I can to raise them up to the wonderful adults I know God designed them to be.

My name is Jenny McKinney, I have ARVD, and I really, really want some chocolate.