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Get Up Anyway

I feel like I’ve gone over this time and time again, vomiting positive bullshit out of my mouth. Trying to convince myself the pain is not that bad, the situation will get better and tomorrow is a new day. You know, all the positive things I hear other people say, I’ve been trying to trick my mind into believing them.

The problem is, this is now the third week I’ve been feeling like this. I don’t even really know what’s wrong, I just know everything hurts and I’m super tired. So then I have to wonder, am I depressed?

I mean I honestly have no idea, maybe I am and I just don’t know? I guess it’s possible. The only thing I do know for sure is how guilty I feel over the condition of my physical state.

I keep thinking it’s my fault. I mean, it is just so hard for me to understand how my life ended up here. For so many years, I felt a little sense of pride working as hard as I could, through illness, pain and fatigue. Now I can’t even get out of my bed before noon because of my symptoms. Everything takes me so much longer now and there isn’t really a good way to explain that to people. How do you explain to someone that you look exactly the same, but you can’t do half of what you used to? Doesn’t make sense to a lot of people, shit it doesn’t make sense to me either.

But it is what it is. At the end of the day, this is still my life and I’m the one has to learn to manage it.

So even though every square inch of my body aches and I know if I close my eyes I’d fall back to sleep, I’m going to get up out of this bed and go to the gym. The Heart Failure Doctor told me to build up leg muscles so that is what I’m going to try and do.

In the end, losing weight and building up leg muscles may not make me feel any better. In fact, it could actually make things worse since it’s believed exercising is linked to the progression of ARVD. However, I just have to get up and do it anyways since it appears to be my last option in this fight against my body.

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Two Down

HW:232 lbs

CW: 218 lbs

GW: 150 lbs

GD: 3/23/2019

I forgot to post yesterday but I did remember to weigh. I was down 2 pounds and I hope it continues.

I’ve been working really hard to make healthier eating choices. For example, yesterday I chose grilled fish over fried at Captain D’s. I’m hoping if I continue to make healthier choices, then the weight will just start falling off. At least, that’s what I’m keeping my fingers crossed for!

I’m still not able to cook my own meals, so I’m relying heavily on fast food with healthy options. I’ve tried cooking on and off over the last year, but I just don’t have the stamina for it anymore. When you try to cook, and you really don’t have the energy for it, minor to serious mistakes can happen. From something small like forgetting an ingredient, to a huge mistake like accidentally starting a kitchen fire. That’s right, one time I caught the kitchen on fire because I was so exhausted I forgot how grease fires occurred. It was such a stupid mistake but I was so tired I made it anyways.

Ever since then I’ve been reluctant to cook but I have tried really hard to do it anyways. Unfortunately, it just hasn’t worked out well. Maybe one day I can enjoy the hobby of cooking delicious food again but for now, I’ll just keep my distance from my kitchen.

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No Right or Wrong

My entire body aches and I yearn for rest.

I really thought I was improving things a couple of weeks ago, but now I wonder if I just over did it and I’m still just paying for trying to be normal.

There is no right or wrong, there is only trial and error when dealing with chronic illness.

People have opinions, no matter what treatment you try someone always thinks their solution is the right one. People even convince you to believe in their solutions and it’s only after a disaster you realize you shouldn’t trust anyone, even if you call them doctor.

Even though I spent 30 minutes talking myself into moving from the bed to the couch earlier, I’m not upset today. Days like this use to begin in an array of unmanaged emotions. I’d normally begin crying because I wouldn’t understand why everything hurt. Then I’d continue crying because I felt guilty for crying in the first place, as if I should be stronger than the pain. However, not today.

Today, I acknowledged the body aches and fatigue are still here but no tears. I am learning it is just a part of me and it’s my job to adapt to this life. I don’t want to spend the rest of my life fighting my condition, I want to learn to live with it in harmony. Isn’t that what everyone wants, to feel happy? I mean, I get glimpses of happiness but if I’m being honest, it all still seems so untouchable.

What’s that saying, if you reach too high you might get burned down by the sun? Something like that is what I’m afraid of.

Two weeks ago I had convinced myself I was on a better path, I was progressing. Today I realize I’m still lost in a forest, hurt and moving slow, but still determined to find my way out.

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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. ❤️

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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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#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 😍

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