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Nailed It!

Sometimes we succeed and other times we fail. Today I attempted to do my own nails and it was definitely a fail!

This is as far as I made it before I gave up.

I spent 7 hours total on this endeavor and I still don’t have all this purple dip powder off my nails. I’m exhausted and ready for bed, so goodnight y’all!

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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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Improvement

HW:232 lbs

CW: 220 lbs

GW: 150 lbs

GD: 3/23/2019

This week I felt terrible almost every day this past week, but I got 6 pounds off of fluid. I think my potassium might also be low since I’m more achy than normal. I also haven’t been hungry, which is not like me at all.

However, I’m hopeful this week will see improvement. Dillon and I will be taking a short getaway next weekend, and I really want to be able to enjoy our time together.

I’ve been very successful in my lifestyle change of switching from sodas to green tea. It may not seem like much now, but it’s the first step towards a healthier future.

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Chronic Love Club

CLC MEMBER FEATURE: Hi! Maudie Kay here and I have a chronic illness you can’t see. I was 14 years old when I received my first ICD (pacemaker/defibrillator) after being diagnosed with Arrhythmogenic Right Ventricular Dysplasia (ARVD). The main symptom being treated was tachycardia and I was told developing heart failure to the point of needing a transplant was rare with this disease.

*Eleven and a Half years later…*

I will be turning 26 next week* and my illness has multiplied 10x since my first ICD. In a last attempt to stop my tachycardia because I was maxed out on meds, I had a bilateral sympathectomy performed in November of 2016. The surgery stopped my tachycardia but caused permanent nerve damage to my right hand. Unfortunately stopping the tachycardia wasn’t enough and by March 2017 my heart failure symptoms were exacerbated. My deteriorating health crushed my spirits and I developed anxiety and depression. Even though I’m told it’s normal for those with heart failure, it doesn’t make me feel better having to acknowledge I have a mental illness.

I have now been undergoing evaluation for a heart transplant for almost a year with no definitive answers. Daily I suffer from severe fatigue, chronic pain, nausea and headaches. Not everyday is a bad day, but it’s been a long time since I had a great day.

I’ve been trying to accept that feeling great probably isn’t possible anymore but I can still feel better than the day before. When that happens I am grateful and on days I feel worse, I try to accept that it is what it is. That’s a saying I tell myself often because I know I can’t change my heart disease, my right hand damage or any of my other countless symptoms. I have more specialists than I have friends and I take more pills than I want to.

Despite everything I’ve gone through, things I can’t even begin to touch on, I am still grateful. For without darkness we would never appreciate the light; and through every single negative and terrible thing I have been able to find something good that came from it. It takes work, a lot of work, but no matter how big the mountain is you have to climb, there will be joy at the summit. 💗

Check Out Chronic Love Club’s Blog or follow them on instagram @chronicloveclub

*This post was originally written in February but due to back log, just now published lol just to clear up any confusion for those who know when my birthday is.

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