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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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#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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Butterfly Emerging 2019

Here is the scoop:

Somewhere between 2013 and 2015 I gained weight, a lot of weight! I had been steadily gaining since 2012 but by 2015 it was very apparent. In total, at my highest weight I gained 105 pounds. In 2011 I hit my all time low of 128 pounds and my all time high topped 232 pounds in 2016.

I ended 2016 knowing I had to make changes in 2017. So I lost a few pounds last Spring but I really started to see a difference by Fall! Only about 10-20 pounds gone, holding water makes it super inconsistent, but I can see a little difference in my appearance already.

After all this time, I now understand chronic illness is just my cross to bear and I am determined to become strong enough for it. This means I have to really recenter my mind, body and spirit. I honestly feel like my body will be the easiest of the these tasks. So with that, I am beginning my one year weight loss challenge. I am going to start posting weight updates every Sunday and that’s all I know so far. I’m not even sure where I’ll start, maybe a detox or keto, we’ll see. I just know a year from now, I will be in a better place.

HW:232 lbs

CW: 222 lbs

GW: 150 lbs

GD: 3/23/2019

I actually can’t believe I’m doing this. I’ve always been tolerating of my plus size figure but I never wanted to disclose my actual weight. Admitting the numbers still kind of shocks and disappoints me. I now admit I have not been doing everything I can to help myself but I’m going to change that. So I’m going to share this butterfly quote again because it’s just completely in sync with how I’ve been feeling.

I’m leaving the past as I transform my mind, body and spirit into something new and beautiful.

I haven’t felt this confident or excited in a long time, so I’m really ready for this new chapter of my life. 🦋

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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.

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Present Day

I have heart failure and I keep getting weaker.

That is the simplest truth. Simple, hah! As if anything has been simple.

In addition to heart failure, I have Complex Regional Pain Syndrome (CRPS). Never heard of it? Yeah,  me either until earlier this year. Yet, that is what they call the damage to my right hand/arm. How was damage done to my dominate hand you’re wondering? Don’t worry, I’ll give you the brief version for now.

November 2016 I went in for a Bilateral Sympathectomy at Johns Hopkins Hospital to  stop my tachycardia episodes. Though experimental for treating my condition, sympathectomy surgeries have been performed for decades to treat hyperhidrosis (excessive sweating).

Since the surgery…

Good News: No more tachycardia!

Bad News: My brachial plexus was damaged during the surgery. Thus I’ve suffered from numbness, pain and limited hand function ever since.

Good News: The last few months I started regaining partial function of my right hand. I can now close my pinky, ring and middle finger! They’re still numb but this is great progress.

Bad News: I now sweat excessively from the chest down.

Good News: I no longer sweat on my face, which is great for my makeup!

As you can see, I continue to have struggles. Yet,  there are still many positives that have come from this experience. I truly believe that even in the most tragic of events, something good will come from it. It may take days, months or years to understand and see the upside, but I fully believe the good will be revealed. I’d love to tell you why I so passionately believe in this, however, that’s for another time.

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