Now

Slow and Steady

HW:232 lbs

CW: 214.8 lbs

GW: 150 lbs

GD: 3/23/2019

I haven’t posted my update in a minute, oops. Consistency is difficult these days but I’m still trying to lose weight.

I started doing 5 squats a day around the first of May. I know it’s not a lot, and it’s sad I can still barely do 10 on my great days but it’s progress.

Speaking of progress, there is proof I am getting younger and thinner 👏🏻👏🏻 I was ID twice today to verify I was over 18! That hasn’t happened in a long time, so I’m thinking it’s a good thing.

I can’t wait till I feel better so I can do my make up. I really want to get a good new picture of my haircut, I’m really loving it short! It’s so much easier to manage. Unfortunately, I have been having problems with my left arm and hand, and as you know my right hand doesn’t work properly already. So doing things has been a little extra difficult, so the fun stuff like GLAM, has been put on hold. It’s OK though, working on my T-shirt’s is a fun task I’m loving right now, that still offers a way to make extra cash. I just can’t stop trying to make my own money; hustler at heart.

https://teespring.com/stores/chill-revival

Standard
Now

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.

Standard
Now

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.

Standard
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

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.

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

Gift Of Time

Dillon and I fight pretty often. It’s not like name calling and violence, but we are constantly arguing about something. We are both fiercely stubborn, but it actually may just be me who is stubborn, oops.

However, during an argument this weekend, which is Dillon’s version of helping me during a panic attack, he said something I really took to heart.

He told me I have something that so many people wish they had, time. Despite the doctors appointments and feeling bad, I still have all this free time to do anything I want.

Of course I was mad at the time, I was coming out of a panic attack all hyped up on feelings but I haven’t stopped thinking about that.

He is right, I do have time. I get to wake up when I want, I get to go where I want and I can work on anything I want. I have the time to see old friends and learn a new skill but I haven’t.

On days I feel good, I’m normally consumed with guilt for feeling bad the days prior. I spend so much time in my head sulking that my good days pass me by, wasted on guilt.

I’ve decided no more. No longer can I be adding to my burdens, I have to be the one to change them into blessings.

I’m not exactly sure how I will achieve this, but I’m going to work really hard to make it happen. I want to live a full life, not a life full of excuses. I have chronic illnesses but they can’t be what defines me.

Standard