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Five Must Haves for POTs Patients
There are a lot of things I have specifically for my medical condition. I wanted to outline a few things that I have that are for my POTs. These were helpful for both before and after I was diagnosed. If you’re new to the diagnosis or you think you might have it, considering investing in these tools. Here are five must haves for POTs patients. Pulse Ox I got my pulse Ox monitor only recently. I was relying on my apple watch to tell me my heart rate. 99% of the time my watch is accurate. The oxygen saturation component is particularly helpful and not offered on my watch. When…
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I'm Not Broken
I’m not broken. I have a chronic illness. I do things differently. I must accommodate my disability or risk having severe consequences. That doesn’t make me broken, it makes me human.This topic has come up a few different times recently. I’ve addressed in blog articles the narrative that we set for ourselves. Today I’m talking about other’s narratives about me. I want to address this because much like my language matters, your language about me matters. I can’t change my disability. It is a part of me. When you say things like, “cause you’re broken.” It’s often very hurtful. I do a lot to manage my disability. I often try…
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A Year of Blogging
I can’t believe it but I’ve been blogging for a full year. I finally took the plunge last year after medically withdrawing from the semester. At the time, I was concerned about my neurological health. The possibility of a progressive disease was looming in the distance. It was an incredibly intense time and starting a blog felt like a way to regain control and speak my truth. I can’t thank my brother enough for helping me in this endeavor. Let’s look back at the past year. I found out that my form of dysautonomia is not progressive. That was a big win. I got my tonsils removed after a very…
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Qualities I Look For In Friends
If chronic illness has taught me anything, it is choose your friends wisely. We are all equals but some people are much kinder than others. I know this article isn’t like my usual ones but I think it’s important to talk about. It’s easy to cling onto people when friends are sparse. Easy friends are often the ones to leave when life gets difficult. I grow close to people that I imagine will be there for me in a crisis. It’s not a full proof plan but these are some of the qualities I look for. Empathy I think that this is the most important. Empathy is essential to walking…
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Why My Health Will Always Come First
Having a chronic illness comes with some difficult balancing acts. When I was in the thick of it, my only focus was my health. Now, I am doing better and I don’t have to focus on my health as much. That’s relative to how much vigilance I had before. Still, I’ve gotten to take a step back and relax a bit from the rigid life I was living. That comes with mass amounts of relief but it also has come with it’s own learning curve. As I’ve gotten busier with school and a social life, my health has fallen into the background. With Crush by my side, it’s easy to…
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Five Businesses That Spread Dysautonomia Awareness
It’s still Dysautonomia awareness month!! I wanted to highlight a couple businesses that are run by those living with Dysautonomia. This is a great way to spread the word about Dysautonomia. It also supports those who live with a chronic condition. I really hope you find something you like, if you don’t go over and support their social media. All of their links are below! Spoonie Sister Shop This Etsy store is tailored to spreading awareness about rare chronic conditions. All of their items are cute, fashionable and affordable. Personally, I’m a big fan of the “Pumpkin Spice and No Unsolicited Medical Advice” shirt! Grace and Brace I bought my…
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Why I'm Open to Changing My Plans
Right now, I’m sitting in a place of discomfort. I always have a plan. I’ve always known what I wanted. Suddenly, I’m clueless. I’m in my final year of school and up until a couple of weeks ago, I was going to Canada next year. That was my destiny. I got home from Ireland and made it law that I would once again leave the country to study. I still want that. I still want to go to graduate school, but I’m not sure if it’s what I want right now. I haven’t given up on Canada by any means. I will still apply. Fingers crossed, I get in and…
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Four Ways to Stay Warm in Fall
The weather is changing and whether you’re a fellow spoonie or not, you may be feeling the effects. I always struggle with the changing weather. For me, my circulation becomes a big problem with cooler temperatures. Having Raynaud’s phenomenon, if I don’t stay warm enough, my limbs will turn purple. That’s the best case scenario because once they start going numb, I know there’s a problem. Here are five ways to stay warm in the fall! Layer Up! This is obvious but there are lots of options you may not know about. When I started having issues, I’d end up sweating through clothes. I layered too much. Then when I…
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How to Prepare for Interstim Surgery
Recently, I had surgery to implant a battery into my back. This connects to a wire that stimulates my sacral nerve. This process of getting to this point was extensive. I started with PTNS, which is nerve stimulation that goes through your foot. After having success with a few trials, my best option was to move forward with Interstim surgery. I had no idea how to prepare for this. I decided to jot down a few ideas here. I hope you find them helpful. Track Symptoms I saw my surgeon only a day or two before surgery. At that point, they asked how my symptom tracking was going. I don’t…
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Why I switched To All Natural Products
The past few years have been quite the journey. A journey with chronic illness. A journey of self discovery. A journey of finding out what is right for me. In my experience, I’ve found that buying natural not only makes me feel good but is better for me. After a year of being sick, I made the choice to become vegan. Going from vegetarian to vegan wasn’t difficult for me. It made an extreme difference for my body and mind. Since I had a positive experience becoming vegan, I wanted to try more natural based products. Of course, not everything I use is natural. Not only is it expensive but…
