Now

Abnormal Heart

“So am I or am I not in heart failure?”

Paraphrasing my doctor:

‘Well you see there still isn’t a definitive answer. We know your heart is definitely abnormal but that’s all we know for sure.’

“Okay…”

Today I wrapped up my doctors appointment feeling relieved. I have to choose to be relieved because it’s the only option to mentally survive the mind fuck that is my life.

The doctor told me to start weight training my legs, just like the guy a few weeks ago, and to lose weight. Then in 6 months, I will do ANOTHER CPX test to see if I’m worse, the same or better.

So here is to hoping that I can become my best self. ❤️

Standard
Now

Twinning with Kay

A few months before Kaydance was born, I legitimately was worried I wouldn’t live to meet her. I was in the thick of being evaluated for a heart transplant, and I just didn’t know what would happen. Live, Die, I didn’t know but thankfully needing a heart transplant has now been ruled out. Maybe in the future but not now, for now I live.

This means I was able to see Kaydance the day she joined our world and many times since. I’ve always wanted a niece even as a little girl, well once I learned I was never getting a little sister that is. Kaydance is such a blessing, we share the same genetics so we have the same eyes and hair, and I’m convinced she looks like me lol I’ve always wanted a twin 👯‍♀️ but I pray she has a better heart and will never have to deal with ARVD and Heart Failure.

BUT if she does, I hope I’m able to be an example of how you can still come out on top. That despite ALL the setbacks you might experience in life, your comeback can always be greater.

She is also a reminder that if I want my own children, I will have to work really hard on my body for it to be a possibility. If I‘m being truthful, I just don’t know if I’ll ever get to have my own children. I really don’t know what my path holds but I know whatever happens, what is meant to be will always be. ❤️

Standard
Now

#Blessed

I’ve heard to make every day a good day and boy did I today! I had so much fun seeing a couple of my old friends at a brunch and brush lettering class held by By Design! I have been awing brush lettering for a few years and wanted to learn how to do it, but due to my post-op hand injury in 2016, I didn’t get to start. However now, I’m finally stable enough with my left handwriting that I felt confident to try this, and while it still looks rough, I’m obsessed 😍 I can even do some writing with my right hand now but I have to hold it in a really weird way and then I’m in moderate to severe pain within minutes. Having CRPS can be a a real bitch 😒 but I guess it was the price I paid to not have tachycardia anymore. It is truly a blessing to say I’ve officially been off beta blockers for over a year now! I really appreciate how time really can heal you, it’s amazing.

After the lettering class, I went with my mom to my nephew’s baseball game. I swear, Kellan is so big now and it makes me a little sad. Mainly because I’m realizing how old I’m getting 😭😂

While at the game I was becoming seriously jealous of baby Graham’s gorgeous eyes 😍 I just wish this picture did him justice! Unfortunately, he isn’t related to me but I’d totally claim that he was 🙌🏻

But honestly, my favorite part of today was getting to spend it all with my best friend, my momma. I am so thankful for my new perspective on life and everyone who has helped me get here❤️ #blessed.

Head over to my instagram for pictures 😍

Standard
Now

Warrior

Today was good, after a very long time I got a surprising answer. I feel a new sense of peace with this information and I want to share it with all of you.

Today I was told by Dr. Tom, who I’ve come to adore for his genuine attitude, that while I do have heart failure it is not end stage heart failure. This simply means I’m not sick enough for a transplant. Which somehow correlated to the sum of: build up leg muscles, which I think was a polite way to say lose weight, and my quality of life will improve. Can you believe that in 2006 it was recommend I stop all cardio increasing activities and now that’s what I’m ultimately working towards?

So after over a decade of a constant fear of activities that could raise my heart rate, I’m determined to overcome that. I don’t want to be a slave to the fear and pain my body endures. I want to be a Warrior, someone who fights through it all and doesn’t show how the wounds phase her.

A warrior is who I shall become because this isn’t temporary, this is my life.

Standard
Now

Library Card

Today it is finally cold and rainy here in the DFW.  I’ve been dreaming of cooler weather for months, so I’m loving the temperature. However, I did not love driving on highway 183 to Dallas in the rain. Talk about anxiety overload! Between the contrustuction, people swerving into my lane and the rain, I’m lucky I made it without crying lol (I cry when I feel overwhelmed).

I saw a headache specialist today, waited six months for this appointment, not even kidding. I started a new medication today, so let’s hope it helps and doesn’t cause any adverse side effects like my last one.

Doctor’s Office Selfie

I’m also really proud of myself, because after I came home and ate lunch, I got back out of the house! I know, shocker! I picked up my prescriptions, checked out the local library (yes, I got my first library card since I was a child) and even managed to grab apples and water from the store. I’ve been short of breath since Monday, holding extra fluid and boy does it wear me out.

I tried to get information about volunteering at the library but for some reason, both ladies working had no idea where the forms were. I’m not sure what a library volunteer even does, but I’m getting desperate for human interaction. I miss working, having people to talk to about work goals and life goals. I miss connecting with coworkers, you really don’t realize how big of a roll those things play in your life until they are gone.

Looking for books at the Hurst Library

Standard
Now

One Year

It has officially been one year since my sympathectomy surgery. A surgery that decreased my tachycardia but caused severe nerve damage to my right hand and arm. A surgery that hasn’t kept me out of the heart failure doctor’s office, which is all I wanted.

Did the surgery make me better? Define better

Do I regret the surgery? Absolutely

Knowing what I know now, I would have never had that surgery. The emotional and physical pain I’ve endured just isn’t worth it. While I heard a couple of success stories about the sympathectomy before I had it done, I wasn’t as fortunate. Yet, that’s okay. Not everything can always go right, that’s life.

I live with the consequences of my decision daily, which is why the idea of having a heart transplant terrifies me. I don’t want to die. There is so much I want to do, and even though it’s getting harder to maintain my independence, I just dig in my heels and keep trying.

Eventually, it will come to transplant, I already know deep within myself. But until that day, I’ll keep tying to find my new normal.

Standard