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New Normal

It was really hard getting out of the house today after feeling so bad the past few days. But this morning after my mom called and woke me up at 11:30am, being the 6th time I was awaken since going to sleep that night, I realized I had to get up.

Yesterday I made a promise to myself, a prayer, a beg from the universe, whatever you want to call it. In the peak of what I’ve determined as the WORST pain I’ve felt in a long time, I was desperate and said to myself: “Everyday, no matter how bad you feel, what may hurt or how out of breath you get, everyday that isn’t like this, you will get your ass out of this house and start enjoying life again!”

Yesterday was a wake up call for me because I realized this general feeling that I refer to as “tired” isn’t going away and I will always feel moderately shitty for the rest of my life. I mean, I have several chronic illnesses that have heavily impacted my life and they have totaled my body. I’m running on faulty and missing parts, just doing my best to put myself back together again. I will never be what I once was, but I can look just as good once I’m refurbished.

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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. ❤️

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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

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New Normal

The last few days were much busier than normal. I really pushed myself on Saturday and had an entire day out and about. Then on Sunday I even managed to make it to a brunch with friends. For the first time in months I was very active on the weekend and boy, can I feel it.

It’s already Tuesday and I’m still so worn out, but that’s okay. Being more worn out is going to be my new normal and I’ll adapt in time.

Yesterday I saw my heart failure specialist and we went over the official report from my test on the 18th. As I was previously told, my heart is severely limited but they are optimistic that adjusting my defibrillator settings could provide me with a better quality of life. However, not overly optimistic, so we have started preparations for heart transplant.

Heart transplant is likely going to come down to my choice. Either I can choose to live this very limited and exhausting life or I can get a heart transplant. Having a transplant could give me a better quality of life but could also lead to an early death.

I mean, no one makes you get a heart transplant.

So I’m at peace with this outcome, for now. I am trying to do as much as I can daily, and hopefully I can find a rewarding and sustaining lifestyle. One that is both meaningful and manageable in my current state.

This was never the life I imagined for myself. If you would’ve asked me a year ago where I’d be today, I would’ve told you that I’d be in college  working on finishing my Bachelor’s in business management, while still working at Texas Health Resources. I would’ve told you how excited I was about my upcoming surgery on November 8, 2016 and how optimistic I was that I’d be able be more active, maybe even able to play recreational softball come the spring. I probably would’ve even included how I was planning to take a microblading class in January so I could have a side job, that brought in good money. Last October, I was having high hopes for my future. Everything I have been planning for the last four years was still on track, and I knew I was going to achieve everything I wanted to by 30.

That was another life.

Today I am a 25-year-old who has had to file for disability, being approved is my only hope of having a sustainable and consistent income. Not only that, but my only chance of having insurance after my 26th birthday. I literally am on track to having to identify myself as disabled and that just makes me feel very sad, as well as guilty. However, I just have to learn to embrace this new life and make the most of it. Because as I’ve learned, things can and eventually will, always get worse.

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