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Stop Saying These 5 Things to People With Chronic Illness
I have had lots of poor experiences with people sharing their opinions on my chronic illness. The majority of people I’ve met with health issues experience this same problem. Everyone wants to help but unfortunately, it’s often more hurtful than helpful. I know that most people mean well. I know that everyone wants to come up with a solution. I know that it comes from a place of love. That said, if someone is sharing their experience, ask before giving advice. In my experience, I need to explain that I’m venting and don’t need any help. I just need to state how I’m feeling. If you can’t fight the urge…
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My Experience With PTNS
Last Friday, I had my first experience with PTNS. For those who don’t know what that is it’s “Percutaneous Tibial Nerve Stimulation.” It’s used for those who suffer with incontinence. It controls the messages the bladder receives by stimulating a nerve. There’s a lot of science behind it but I don’t fully understand it all. I’m using it to help my bladder leakage. If you’ve read my post “A Long Road That Ends With Surgery” you know that this is the second to last intervention. After this, I get a nerve stimulator placed in my back. The hope is that this therapy will give the doctors a better idea of…
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How to Prepare for a Tilt Table Test
If you have any form of Dysautonomia, the tilt table test is likely your worst nightmare. It’s minimally invasive but it’s not a fun experience. If you don’t know how to prepare for this test, consider this your how-to guide. I have had three of these tests in a year span. That is WAY too many but every new specialist wants their own confirmation. This is how to prepare: Stop Your Medication: I choose to stop my medication a week beforehand. Every lab has different rules on the exact number of days that you have to be off of medication. Check with your doctor to confirm but this is my…
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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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A Review of Liquid IV
I have had mixed experiences with electrolyte drinks. Some have too much sugar, others don’t work or cause other problems, and some taste horrible. I found liquid IV relatively soon after being diagnosed with POTs. I think it’s convenient because of the packet style. They fit into bags, I often keep several packets in my car. They’re just handy to have around. For a while, I only drank Liquid IV and water. I was symptomatic but felt well hydrated for the most part. It was later that I started supplementing with small bottles of Gatorade. Liquid IV was no longer holding me. Like my health, my dependence on various electrolyte…
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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 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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Vera Bradley "ReActive Large Travel Cosmetic" Review
So it might seem weird to review a cosmetic case right? Well, I actually use this for my medications. Having gone through a lot of different experiences with medication bags, I find it helpful to see reviews of what works for other people. So let’s dive right in. I got the Vera Bradley “ReActive Large Travel Cosmetic” My first impression was overall good. I knew that it would be bigger than my previous case, that’s why I got it. I will warn you, it is pretty big. Luckily, since getting Crush, I carry around a decent sized backpack otherwise it wouldn’t fit. It has lots of pockets. The one in…
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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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Summer Has Started
It’s officially Summer! I’m so excited. I know that this year will be considerably different than years past but I’m okay with that. The past two Summers have been a bit weird for me. In 2018, is when my throat started closing for the first time. From June 2018- on, my life has forever changed. That time period was spent finding out what my new normal was. It was full of anxiety and unknowns. I was getting ready to move to Ireland. I was excited and terrified, trying to be fearless. Last Summer was a beautiful mess. I was learning how to walk again. Then I was running, still trying…
