My Experience
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A Long Road That Ends With Surgery
I’m facing another surgery. This seems insane to me since I’ve already had two in the past six months. The reality is, my doctors have run out of options. I have struggled with urinary incontinence for eight months. It’s something I don’t talk about often because frankly, it’s difficult to admit. Such a basic human function is not working in my body. It’s not as simple as that. I don’t have a sense of my bladder. I don’t know when it’s empty or full. The only indication I have that my bladder is full is pelvic pressure which isn’t always there either. This is a complicated and confusing problem. This…
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I Have Hope
It feels like the last few months have flown by. So much has happened and not just in my life. The world is changing before our very eyes. This is the longest period of time my health has been “stable” in the past two years. I say “stable” because a lot is still going on. I am celebrating six months of not being hospitalized. It’s a weird party to throw and there’s no balloon or card that celebrates that event but I’m excited. I went through this same type of transitional stage last year around this time. Suddenly I’m going from reacting to being. When some of these health threats…
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Owala Water Bottle Review
I ordered two 32 ounce stainless steel Owala water bottles. I got one with a flip spout and the other with a twist cap. You might be asking yourself, “why do you need 64 ounces of water at any given time?” The answer would be, I need to drink at least three liters of water a day for my POTs. It’s an insane amount of water but I digress. I chose to get one with a twist cap so I could put Liquid IV in it. When you use a water bottle with a straw with Liquid IV, it can get moldy or gross in general. I opted for stainless…
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The Spoon Theory Explained and Why It's Important
If you’ve been following my blog for a while, you may have seen #spoonie or #spooniesister. So what does that mean? The spoon theory is used to explain our energy throughout the day. When you have a chronic illness, you may start with spoon depletion. Say you have 20 spoons at the start of the day. You choose to shower (5 spoons). You cook lunch or dinner from scratch (5 spoons). Then you go to work (10 spoons), by the end of the day, you’re completely out of spoons. All your energy is gone. This may impact the number of spoons you start with tomorrow. You may choose to borrow…
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My Favorite Meditations from Insight Timer
I love Insight Timer, I have it as an app on my phone. It’s got thousands of meditations of different lengths and content. Lots of different creators with different approaches. All around, I haven’t found any issues with this app. In fact, I recommend it to everyone. That being said, I thought I’d give a list of my favorite meditations so if you’re starting out you have a place to begin! There are links below to the app store and google play. Apple App Store or Google Play Store For Stress and Anxiety: Allowing Your Thoughts to Flow by Lama Yeshe Rabgye (12 minutes) Radical Acceptance by Chad Foreman (21…
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What to do When You Feel Out of Control
There’s been a lot going on lately. The world seems to have flipped upside down, at least in the United States. I’m not going to get into the politics of it. Right now, you might feel out of control. We’re all experiencing a little bit of feel helpless. So how do we deal with that? Here are some ideas to help you regain a sense of control! Turn Off the TV This is important. We all need to stay informed and up to date but it doesn’t have to be our primary focus. You need to take a step back. What is happening is not going to change if you…
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My Interview with the Invisible Wave Movement
A few weeks ago, I had the privilege of speaking with Jessica from the Invisible Wave Movement. Their mission is to: “Raise awareness, foster community, and advocate for policy for young adults with chronic conditions all around the world!” Being able to do this gave me a lot of joy. My goal, being a theatre major, has always been to share the voices of those who are waiting to be heard. I didn’t anticipate being part of a community where my own voice was silenced. For a while, I was stifled by the realities of my condition. Getting the opportunity to speak about my journey with chronic illness was a…
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STOP INTERACTING WITH SERVICE DOGS
The general public rarely has the opportunity to interact with service dogs. There are thousands of service dogs working throughout the United States. Most people don’t know how to interact with them. I’m going to explain why Crush and I need space in public. In addition, I will talk about why in general you shouldn’t interact with service dogs when they are working.Crush is with me in public to do a job. He is my lifeline. When my blood pressure or heart rate gets too low, he alerts me. When I’m starting to itch the precursor to a life-threatening allergy attack, he alerts me. His job in public to help…
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I'm Running a Marathon
I’m ecstatic to share that I finally got the approval to run! It has been a long journey back. It’s been eight months since I last ran and these first few times have felt absolutely amazing. As I observe my body in its various states, it’s clear I have work to do to train my heart once again. I assumed when I started running again my biggest obstacle would be my hip. Unfortunately, my heart is having to work in overdrive to keep my body upright. My heart has never adjusted to exercise the way it’s supposed to. Even when I was at my peak of fitness, my heart would…
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Creating a Vision Board
This week I was discussing with my therapist goals and self-care. Both are important in achieving what you want out of life. Finding self-care has been difficult for me lately. I’ve been in and out of appointments, along with school and other obligations self-care falls away. I always keep up my healthy patterns but during the day, I do very little to let myself take a breath. My therapist brought up a lot of various ideas but one that stuck with me was a vision board. Since I’m creating a new one, I figured I would outline what I’m doing. If you need a boost, I’d suggest you build one…
